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General Category => Skin Complaints and Skin Disorders => Topic started by: J on Tuesday January 18, 2005, 09:23:07 PM

Title: Pityriasis Lichenoides Chronica
Post by: J on Tuesday January 18, 2005, 09:23:07 PM
Hi!  My daughter was diagnosed with PLC (chronic version of PLEVA) five years ago.  They told me that it would take several years to run its course, and typically resolves by 7-10 years old, or perhaps into early puberty. (She is seven).  They said that childhood PLC is a little more predictable than adult PLC, because with adult PLC, it is a little harder to tell when it typically resolves.  Something physically happens with children leading up to puberty that causes them to outgrow these conditions (supposidly). 

I have never talked to anyone with PLC, and would be interested in hearing from anyone who has had any experience with this disorder. 

My daughters rash is mainly on her body, and sometimes it crops up around her mouth area.  Not to conspicuous, but it does sometimes flare up and become more obvious, partcularly if she uses certain fragrance soaps, fragrance creams, etc...her skin is definitely sensitive. 

Hope to hear from someone with PLC experiences!

Jahan
Title: Re: Pityriasis Lichenoides Chronica
Post by: peterb on Tuesday January 18, 2005, 09:27:32 PM
Hi Jahan

Welcome to the forum.  We have a few PLEVA members here, i am sure they can offer some useful advice.
Title: Re: Pityriasis Lichenoides Chronica
Post by: Bamawing on Wednesday January 19, 2005, 06:56:08 PM
Welcome to you and your daughter! :hi:
Title: Re: Pityriasis Lichenoides Chronica
Post by: Mharie on Thursday January 27, 2005, 10:17:16 PM
Jahan,
Hello! I myself have PLEVA/ PLC . I'm sorry to hear about your daughter, I can only imagine how frustrating it must be as a parent.  My spots cover almost all of my body and I have had them continuously for 4 years since I was 15.  I too have extremely sensitive skin! I cannot use any regular soaps or fragrances or detergants- no one in my house can use anything smelly like that either or else I break out terribly and also have traditional allergy symptoms. The thing that makes my skin the worst, though, is water. I though that soap was the problem for quite a while, but the doctor confirmed that water makes my PLEVA/ PLC spots worse- especially if it is hot water. My diet impacts my skin greatly also, I have to stay away from caffiene, chocloate, iodine- many things trigger my outbreaks.  I hope your daughter is doing well! It is so great to get to interact with others who are famillar with this condition! Thanks for sharing your story~
Mharie
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Friday January 28, 2005, 12:33:36 AM
Hi Mharie,

I was curious; you mentioned that you have PLEVA and PLC.  My daughter only has the PLC part.  I was under the impression that PLEVA shows up with scabbing/pussing, chicken pox like, etc.., and PLC is "less angry" looking, and does not puss/scar etc...

Did yours start off as PLC and then change into PLEVA, or have you always had both PLC and PLEVA?  What have your doctors said about prognosis etc. ?  Did they say anything about the whole possible lymphoma/MF (mycosis fungoides) connection?    My doctor told me that he didn't think that this is likely, and that the statistical rate of PLC to lymphoma/MF was perhaps similar to that of the general population; although no one knows for certain since it is a relatively rare condition.

 My daughter goes to a pediatric derm, who at least has seen it.  The regular dermatologists seem to have just read about it in text books.  We used to live up in Boston, and the derm there was great.  This past year we moved to Florida, and there are only a couple of pediatric derms in florida.  We have to drive nearly two hours to get to one. 

I am so happy to even just "talk" to a fellow PLC-er.   Thanks for responding. 

Jahan
Title: Re: Pityriasis Lichenoides Chronica
Post by: Mharie on Friday January 28, 2005, 03:58:23 AM
Hello Jahan,
I'm not sure if you read my introduction, but I mentioned that where I live, finding people in the medical field with any knowlege of this has been nearly impossible. My derm told me that I have Mucha- Habermann's disease, and said that for me it encompassed both PLEVA and PLC. He also said that he was under the impression that it was actually a blood disease of the immune system, that manifests in the skin.  I have severe allergies and so it is not rare that I have hives for one reason or another, so when I first got MH  I assumed it was allergies. I waited 6 months before getting a medical opinion, so I really don't know if my PLC evolved into PLEVA or not. The spots that I have can absultely be separated into individual categories though.  Some of them are chicken pox- like and do bleed and scar etc... others of them are the typical hard spots which have the 'frosted glass' look and have a brownish red bump underneath and yet others come in patches and are very painful and take many, many months to heal. Nearly all of them leave me with a brown mark that eventually fades over time and can itch like crazy. As for prognosis, the doc told me flat out that there is no cure, no treatment- they don't know where it comes from or how you acquire it- and sent me on my way to research it any more in depth myself and after a few months of severe allergic reactions to medications and such- I haven't gone back  in over three years. So, I have never gotten a doc's opinion on the possibility of lymphoma or anything.
You said that your daughter's spots flare up- does she have a constant rash that worsens, or do new spots appear when she is exposed to her triggers or whatever? It is unfortunate that your move has made the derm situation a difficult one- it is so great though that at least some of these docs have seen it before. I was treated in the largest city in Montana with the most variety of physicians, and still it is a mystery in the area. It breaks my heart to think of a child having ot deal with this bizarre skin problem!
I too am glad to get to talk to a fellow PLC-er!
Mharie
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Tuesday February 01, 2005, 04:03:53 PM
Hi Mharie,

From what I was told, Mucha Habermann's disease is a general name for PLC/PLEVA, aka parapsoriasis (old-fashioned term).  Of MH disease, you either get the chronic version(PLC) or the more acute PLEVA version, with pussing, etc...  Sounds like you have the acute PLEVA version, which is frequently described as looking like chicken pox.    My derm up in boston had seen quite a bit of it, because he specialized in the rarer conditions.  I have yet to go to the pediatric derm here in Florida, but I am hopeful.  My daughter's PLC never ever bleeds/pusses/scars, and luckily doesn't seem to irritate her, physically at least.  (although she does have a generally sensitive skin to soaps, acidic foods such as tomatoes, etc..)   It is basically a reddish-brown spot (3-5 mm in diameter) with a mica-like scale on it (looks like dry skin, and peels off "frosted glass" as you called it).  New spots appear continuously, most often pronounced on her trunk, upper thighs, and upper arms.  There are spots elsewhere such as on her back, front, and lower arms/legs.  None on her palms/soles, scalp, and occassionally a couple will crop up on her chin area.  The spots appear randomly, and may dissapear after several weeks or longer.  Some are really small, and some are larger and more scaly.  My derm said you only need to be concerned with PLC if the spots get to be as big or bigger than a quarter, and look "really angry", pussy, etc...  They didn't seem to think that my daughter's PLC would evolve to PLEVA, since you either get one or the other.  Although they said that with PLEVA, some spots can be PLC-ish; but rarely the other way round.  My derm said that they are uncertain about the cause of PLEVA/PLC, but believe that it is an immune related disorder, something to do with  T-cells, and related to psoriasis.  My daughters spots all fade in time.  Sometimes if she is taking swim lessons in the summer, they fade quicker.  If she has a slight tan, the area becomes slightly hypopigmentated (I think that is the right word, a little pale/whitish), but that evens out, and is apparently typical.   

I have been told that both PLEVA and PLC are conditions that grumble on for some months or years.  PLC is typically meant to take longer to clear up, and PLEVA is shorter duration.  I specifically remember that he said  young children (pre-puberty) suffering from PLC/PLEVA are a little more predictable with their prognosis, and usually clear up by or during puberty.  There was one young boy (young teenager) who had had it all over his body as a kid, and by 12 or 13, it was just on his hands.  My doctor said that when you get it during teenager years, after puberty, it can be a little more unpredictable as to its duration.  It is meant to be something that ends though.  I have read about several people with PLEVA, and some seem to go on forever, but some do clear up.  I feel really bad for you having it too.  You mentioned that you were got it when you were fifteen?  That must have been terrible.  How was it in high school, and were people pretty cool about it, or did you get the stares?  I know my daughter is starting to become self conscious about it, during gym, etc.... but I am trying not to make a big deal about it.  Inside, I feel really bad though. 

Take care,

Jahan



   
Title: Re: Pityriasis Lichenoides Chronica
Post by: Mharie on Friday February 04, 2005, 05:58:10 AM
Thanks so much for the info! It is so good to hear from someone who seems to know what they are talking about! Yeah- I got it when I was a freshman and because I live in such a tiny town, it spread around school fairly quickly- especially since I was very sick at the time ( don't know if they are related ). Even in a school of 500 students, there are those who feel the need to pick on everyone else I guess!  Gym class was always the worst, because we were forced to wear a dress code of sorts so I couldn't hide my spots very well. Long sleves and pants are a must for me! The stares are the worst though- if people would just ask I would be more then happy to tell them, but I hate to imagine what they are thinking is wrong with me. Now that I am out of high school it has been a lot better though! I have never really though before that this could effect my parents. I have always though that it was just my issue- but I can imagine that it would be difficult not being able to really do anything to help your child in need. My advice is lots of encouragement for her! What doesn't kill you only makes you stronger, right?

I greatly enjoy talking to you,

Mharie
Title: Re: Pityriasis Lichenoides Chronica
Post by: munag03 on Tuesday February 22, 2005, 09:36:19 PM
Hello all...

I just had my biopsy done last week, still waiting for the results - but from doing some research it seems that I may have PLC. My dermatologist had NO clue what the heck I had (which scared the heck out of me). I first noticed these spots on my stomach and hips about 6 months ago - not really thinking too much of it, I decided to ignore it.. In the past 2-3 months however, the spots seemed to have spread rapidly around my back, shoulder blades, thighs, and inner arms.

I have tan skin so these spots are blatantly obvious being pretty close to dark brown, maybe even black in color.

I'm really concerned.. kind of scared too.. but starting to feel a little more at ease seeing that others have experienced the same thing.

Here are some links I got for some more info..
http://dermnetnz.org/scaly/pityriasis-lichenoides.html
http://www.thedoctorsdoctor.com/diseases/pleva.htm

Look forward to talking to you,
Mun
Title: Re: Pityriasis Lichenoides Chronica
Post by: peterb on Tuesday February 22, 2005, 09:47:03 PM
Hi there munag03, and a warm welcome to Skincell.  Hope you can take comfort, that you are not alone, and there are others here with whom you can share experiences.
Title: Re: Pityriasis Lichenoides Chronica
Post by: silbi74 on Wednesday February 23, 2005, 06:20:16 AM
I was just told by my derm that my condition is consistent with PLC...and there's no proper medicine for it yet. Are we not special people??

Still, hope it'd fade away someday...in the meantime, life goes on!

Title: Re: Pityriasis Lichenoides Chronica
Post by: munag03 on Wednesday February 23, 2005, 08:15:02 PM
have most of you seen it more as a rash (does it itch constantly)? or as spots that you wouldnt even know existed had you not looked or noticed them?

i may be trying to diagnose myself too soon... but i'd like to get an idea of it before i get the real news.  :-\
Title: Re: Pityriasis Lichenoides Chronica
Post by: Gail M on Friday February 25, 2005, 06:03:32 AM
Hi fellow suffers.

I was finally diagnosed with PLEVA/PLC In October 2004 after having a biopsy. I was at first relieved at the diagnosis but become angry/frustrated that for the previous 10 years (1993) I had been treated for ACNE and was now suffering the side effects of having used Roccutane. I am now 30 years of age, in my teenage years I had the odd pimple but nothing else. My dermatologist advised that the best treatment was phototherapy and I have been having three sessions per week since. Whilst this treatment does not stop new lesions from cropping up it does help them heal faster and fade the scarring.

I have also been advised by my Dermo that it is more likely I have PLEVA, but I also exhibit features of PLC. Prior to a crop of new lesions appearing I also tend to feel flu'y, with swollen glands and tiredness. As the lesions are appearing I can feel them, they are itchy and it is hard not to scratch, if I do scratch them then it leads to a secondary infection. The latest and worst bout I have been suffering began in April 2002 and has waxed and waned since. My dermo prescribed diprosone ointment for this.  Looking back at my early 20's this all appears to have occurred after suffering a bout of glandular fever, viral hepititas and chicken pox all within three months. I have also become increasingly sensitive to soaps, deodorants, perfumes, insect bites etc etc.

I went to my GP today and he has suggested I ask the dermo for a referal to an immuniologist to see if there is anything I can do to help repair my immune system. I will keep you posted.



Title: Re: Pityriasis Lichenoides Chronica
Post by: peterb on Friday February 25, 2005, 06:43:25 AM
Hi Gail M

Welcome to Skincell.
Title: Re: Pityriasis Lichenoides Chronica
Post by: Gobe on Friday February 25, 2005, 09:03:17 AM
 :hi:

Welcome to Skincell Gail!

 :)
Title: Re: Pityriasis Lichenoides Chronica
Post by: Janice on Tuesday March 01, 2005, 11:33:08 AM
I've just been diagnosed with this after biopsies and cant see Consultant to start treatment (whatever that will be)till May! I feel so embarresed with it
Any ideas of things to try?
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Wednesday March 02, 2005, 04:44:56 PM
Hi everyone,

Although I am sorry for all us PLC-ers out there, it is nice to hear of other people having this condition.  (My daughter who will be seven this summer has had it since she was 2). 

Janice, my doctors have always told me that for PLC, there is no cure, and that you have to let it run its course (although it can take years).  They mentioned phototherapy to me, but discouraged it, since my daughter is so young.  (Also, when she has clothes on, the spots aren't that visible).  Plus, they said that although the phototherapy would improve it, it certainly would not cure it.  My daughter takes swim lessons in the summer (we now live in Florida).  Although I use sunblock all over her, and her lessons only last 45 minutes, she gets a bit of colour and it substantially fades the rash for a few months.  However, where spots fade, I notive a hypopigmentation (it looks pale).  This is normal and does even out after another month or two. 

I forget the name of the other lady who thought she may have PLC (mun something?).  Let us know your results, and hopefully it is not PLC!

Take care,

Jahan
Title: Re: Pityriasis Lichenoides Chronica
Post by: Janice on Thursday March 03, 2005, 07:58:08 AM
There mustbe something, they only appeared last summer. never had them before.
I had recently had a baby she was 6 mths old, i thought perhaps there may have been a link?hormonal.
Theyre awful, all over my lower body. Thay dont itch, im fair skinned and they are red & purpley
I cant wear skirts at all and  ???  ???hide my legs completely from my partner.
Frustrating to say the least!
Janice
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Thursday March 03, 2005, 01:26:53 PM
Hi Janice,

You mentioned that your spots are on your lower half and pinky-purple.  My daughter is fairskinned too, although hers tend to be more pink-red.  It is more pronounced on the backs of her legs (above the knee) and on her trunk/bottom.  (My derm said that this is typical presentation to have more on the upper back legs).  Also, her upper arms, and adjacent to her armpits (front and back) is more affected.  (supposidly typical).  My daughter's rash just started out on her legs and spread really rapidly over a course of months.  From what I understand, it does not seem to be a hormonal thing.  Just something related to T-cells and the immune system (similar to psoriasis).  I still don't know what T-cells are all about.  Her spots are typically between 2 and 5 mm in diameter, although some become larger  (1 cm), and take much longer to fade (months).  The larger ones are more scaly, and my daughter, who is young, will sometimes "peel" the larger ones.  I am always trying to discourage her from doing this, as I worry it might exacerbate it.  But she is only six, so I can't expect her to listen too much. 

Do yours have a fine scale that peels off, and how large do they get?  I always worry when I see larger ones, and am always relieved to see them fade.  But new ones are constantly cropping up.  Are they pretty flat onthe surface of your skin?  The larger ones seem to be a little thicker for me.   

Did your doctor say anything about lymphoma/mycosis fungoides?  Supposidly there is a RARE increased risk of lymphoma/mycosis fungoides with PLC-ers and people who have the more acute PLEVA.  Incidentally, people with regular psoriasis are also at increased risk.  Another thing for me to worry about, since my daughter is so young. 

Did your doctor have you try any creams or anything?  (Nothing worked for me, and actually, in the beginning, they were having me try steroid creams - which did nothing.   The steroid creams caused my daughter to have a perioral dermatitis, so I stopped using it.  She does have extremely dry skin, so I have to lubricate her skin with a thin layer of petroleum jelly at night.  Any regular moisturizer (even the "dermatologist approved" hypoallergenic stuff) stings her skin.  My derm told me that some people are sensitive to preservatives within all moisturizers. That is why regular petroleum jelly does not irritate her.  Incidentally, if she puts moisturizer on her face, it doesn't bother her.  Just her arms and legs.   

Jahan
Title: Re: Pityriasis Lichenoides Chronica
Post by: Janice on Thursday March 03, 2005, 01:31:46 PM
Theyre more concentrated on my inner aspects of calves and thighs although alover.some are sadly over 1cm and are very very slightly more raised than others.
as i say ive not seen "Specialist" yet but diod go through many steroidal based creams from my GP prior to referral.
JAnice
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Thursday March 03, 2005, 01:46:42 PM
Janice,

Do some of yours have a fine scale that peels off, and is your skin dry?  What else did they say to help you out?

Jahan
Title: Re: Pityriasis Lichenoides Chronica
Post by: Janice on Thursday March 03, 2005, 02:14:59 PM
the larger ones are yes, apart from trousers nothing!!!!!!!!!!!
Title: Re: Pityriasis Lichenoides Chronica
Post by: Karen19 on Friday March 04, 2005, 05:52:11 PM
Hi,

I have just found out that I have got Pityriasis Lichenoides (Chronic I think!) I am well used to skin conditions as my son has had severe eczema throughout his life. I am a 45 years old (Seems like it normally hits people before 30 so I am either very youthful or very unlucky. Thanks for the messages that you have all left, it is good to know that other people have heard of this condition. I am still experimenting with ways to deal with my skin..the worst aspect for me is that people always think I am contagious. My skin feels hot and uncomfortable, but I am lucky in that there is not much itch. I am not looking for a cure for my skin; I have learnt that what you can't fix you need to live with, but I know that it is easy to get down from time to time. I have lots of experience of family living with 'mouldy skin' so if I can help with any tips I will. 

Karen.
Title: Re: Pityriasis Lichenoides Chronica
Post by: Janus on Friday March 11, 2005, 02:50:01 PM
I am a 57 years male and have had PLC twice. The first time  I had these red spots basicallly on my chest. The dermat. who saw me said she knew what it was but did not have a cure to recommed, except giving me DESOWEN cream which helped. About a year or so, I got it again and went to the deramt. (adifferent one). He did not know much about it si he prformed a biopsi and the lab results confirmed that it was PLC. He gave me a different cream, which hardly helps. In the emantime, the spots hace spread to my rigght and left arm, plu almost all my torso.

Did I read correctly that the sun can help cure it, and that hot water is bad?
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Friday March 11, 2005, 06:18:52 PM
Hi Janus,

When you first had PLC, how old were you?  Nothing as a child either?  How long did your first bout with PLC last?  I found that there is no particular cure (so far, I hope), although some sun does help.  On your second bout with PLC, has it been a year?  I haven't heard anything about hot water, but my daughter seems generally sensitive on the skin and prefers lukewarm water.  Also, since the PLC spots are a little flaky and dry.  I just use an emmolient cream.  She has them on her arms, legs (mainly upper), and torso.  To a lesser extent on her chest, but around her waist area too. 

Jahanara   
Title: Re: Pityriasis Lichenoides Chronica
Post by: Karen19 on Saturday March 12, 2005, 07:34:21 AM
Hi to all you fellow PL sufferers. Since  last mailing (so very positively) the itch and soreness have started. I have the rash all over both arms and hands, both legs and feet and on my backside. the most painful bit for me is on the side of my breasts where the bra strap rubs. (Sorry guys, I know that is gross)
I have found that soaking in a bath of warm water with lots of oatmeal really helps. (A trick which I picked up from my eczematous son.) When I get out of the bath I cream all over with cocoa butter. In my case, the itch seems to be brought on by the extreme dryness of my skin rather than the rash, so that it what I try to treat. does anybody else find that the rash is much redder and swollen in the evenings? Mine seems to deteriorate as the day goes on.

Wishing you all well


Karen.
Title: Re: Pityriasis Lichenoides Chronica
Post by: Janus on Sunday March 13, 2005, 02:08:03 AM
Hi Janus,

When you first had PLC, how old were you?  Nothing as a child either?  How long did your first bout with PLC last?  I found that there is no particular cure (so far, I hope), although some sun does help.  On your second bout with PLC, has it been a year?  I haven't heard anything about hot water, but my daughter seems generally sensitive on the skin and prefers lukewarm water.  Also, since the PLC spots are a little flaky and dry.  I just use an emmolient cream.  She has them on her arms, legs (mainly upper), and torso.  To a lesser extent on her chest, but around her waist area too. 

Jahanara   


Hello Jahanara!

I believe the first time I had PLC  I was 54 or 55 and it lasted less than a year. The second time it was 7 or 8 months ago. They don't itch much and when they do I try not to scratch. I have found that I already have a couple of spots on my legs too.
About hot water being bad, I read it from someone who posted it here.
It is indeed embarrasing, because people see the red spots on my arms, and they ask, what is it. I start by telling them that it is neither dangerous nor contagious, to ease them somehow. Has anybody tried DESOWEN cream? It did help me the first time.
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Monday March 14, 2005, 09:19:07 PM
Hello Janus,

What is Desowen cream?  I haven't even heard of it (we live in the US now).  I'm willing to try practically anything if it helps.  Also, when you were diagnosed with PLC, did they biopsy both times, or just the first time?  I have always heard that PLC is rather unpredictable in duration for adults.  I am told that children (my daughter who is nearly seven), commonly have it during their whole childhood and typically outgrow during puberty (fingers crossed here).  Also, my daughter pretty much has it everywhere (except face; more pronounced on upper legs and upper arms, and torso).  Her larger spots (1 cm diameter) tend to have a scale that you can peel.  (I try to discourage her from doing this but, she is only six).  Do your spots get scaly?  I can't believe that you had it for only a year the first time.  That is encouraging to me. 



Hello Karen,

I really have not noticed an increase in redness / worsening during the evening.  I notice it more as a cyclical thing that goes over weeks.  I think her rash is improving, and then a couple weeks later, there are a whole bunch of new spots.  Luckily hers don't itch, although since she has had this rash, she has extremely dry skin, just like you.  In the past, I tried different types of creams (hypoallergenic/fragrance free, etc..), but they all "stung her skin", as she said, particularly on the upper legs and arms.  My dermatologist said that some people are sensitive to the preservatives used in all creams; she told me that my best option was to use pure petroleum jelly/vaseline.  It is a pain to put on thinly.  But, I do it at night (every other night), and come morning, and her skin is improved.   Also, regarding the oatmeal, do you put real oatmeal in the bath, or do you use oatmeal or oat bran that has been crushed up?  Also, how much in a tub?  I have never heard of oatmeal and dry skin benefits, but I'm willing to try it if it works. 




Take care, everyone,

Jahanara



Title: Re: Pityriasis Lichenoides Chronica
Post by: Janus on Tuesday March 15, 2005, 11:54:26 PM
I live in the U.S. and DESOWEN is a cream I am sure any dermat. is familiar with. The firsts time it helped. Little scaling on my red spots.



Hello Janus,

What is Desowen cream?  I haven't even heard of it (we live in the US now).  I'm willing to try practically anything if it helps.  Also, when you were diagnosed with PLC, did they biopsy both times, or just the first time?  I have always heard that PLC is rather unpredictable in duration for adults.  I am told that children (my daughter who is nearly seven), commonly have it during their whole childhood and typically outgrow during puberty (fingers crossed here).  Also, my daughter pretty much has it everywhere (except face; more pronounced on upper legs and upper arms, and torso).  Her larger spots (1 cm diameter) tend to have a scale that you can peel.  (I try to discourage her from doing this but, she is only six).  Do your spots get scaly?  I can't believe that you had it for only a year the first time.  That is encouraging to me. 



Hello Karen,

I really have not noticed an increase in redness / worsening during the evening.  I notice it more as a cyclical thing that goes over weeks.  I think her rash is improving, and then a couple weeks later, there are a whole bunch of new spots.  Luckily hers don't itch, although since she has had this rash, she has extremely dry skin, just like you.  In the past, I tried different types of creams (hypoallergenic/fragrance free, etc..), but they all "stung her skin", as she said, particularly on the upper legs and arms.  My dermatologist said that some people are sensitive to the preservatives used in all creams; she told me that my best option was to use pure petroleum jelly/vaseline.  It is a pain to put on thinly.  But, I do it at night (every other night), and come morning, and her skin is improved.   Also, regarding the oatmeal, do you put real oatmeal in the bath, or do you use oatmeal or oat bran that has been crushed up?  Also, how much in a tub?  I have never heard of oatmeal and dry skin benefits, but I'm willing to try it if it works. 




Take care, everyone,

Jahanara




Title: Re: Pityriasis Lichenoides Chronica
Post by: Karen19 on Wednesday March 16, 2005, 06:39:56 AM
Hi Jahanara,

Thanks for the info. I but organic oatmeal from the health food  store. A couple of handfuls is plenty. Some people put it in a muslin bag and hang it under the tap. I tend to put it in a sieve and squeeze it. You can get oatmeal based creams, like Aveeno, which are OK. (They don't sting me, but I may not be as sensitive.) Palmers cocoa butter also seems to help. The greasier the cream the better, and vaseline is probably as good as anything.
I am waiting for an appointment to see a dermatologist, as the PL has only been identified by appearance at the moment. (I hope it is soon as I am in agony half the time!) Hope your daughter is OK.

Karen.
Title: Re: Pityriasis Lichenoides Chronica
Post by: Plshart on Friday March 18, 2005, 09:43:59 PM
Hi everyone,

My name is Trish and this is my first time chatting on-line so please bare with me if I make any mistake.  My son who is 7yrs old was just diagnosed with PLC. We are starting a treatment of a topical cream and Erythromycin 4x a day for a month.  His Dr. seems to being getting this method of treatment straight from a text.  I don't believe he has had any experience with the skin disorder. I am wondering if anyone else has done this treatment did it help? Any advice welcome.

Thanks Trish
Title: Re: Pityriasis Lichenoides Chronica
Post by: Angela7 on Saturday March 19, 2005, 01:16:28 AM
Hi Trish - my son is now almost 6 and has had Pleva/PLC  for four years.  The first time we used Erythro it worked very well and his spots started drying up very quickly.  The other two times we had no luck with it and haven't returned to it since.  I could never quite get over the fact that they wanted him taking it for three months or longer, which seemed like alot of time on antibiotics.  His Pleva also initially came out when he was having tons of ear infections and they were prescribing lots of antibiotics - link for him? 

I assume that they did a biopsy to make sure that it is Pleva - esp. if the Dr is not familiar with it, that is important to be sure.  I recommend finding a pediatric dermatologist at a large teaching hospital in a large city (whatever is nearest to you) since they are the only ones who tend to know anything about Pleva.  They at least tend to have more than just one person with Pleva and are much better than dealing with these local Drs that have never seen anyone with it before (I started with one of those).

Sun is the best medicine for my son.  He tends to clear up nicely in the summer, although he gets that hyperpigmentation (white spots where he had spots) and scarring after so many years and so many spots.  Hopefully the sun will give you guys relief too. 

There is definately a link with his spots and his immune system.  As soon as he gets sick (ear infection, strep, whatever) he always starts getting spots.  I have yet to figure out which comes first - his spots and then that makes him sick or vice versa.  Some adults on this site were having great success with Acyclovir a few months back but they haven't checked in in a while.  My doctor does not want to try that with him because he is still young but it is something to remember for later in life if they are still stuck with this.  Also, UVB light therapy can be used for older kids and adults. 

I can attest to the fact that it gets easier over time.  It has now been a part of our lives for years and he is quite used to it.  The less we focus on it the less he thinks about it too.  I hope and pray that it burns itself out when he goes through puberty like many Drs. say happens to kids with Pleva.  Apparently that happens to 75% of people who got Pleva as kids.

Hang in there and lots of luck.  Please let me know if I can help with any questions.  Best, Angela
Title: Re: Pityriasis Lichenoides Chronica
Post by: Karen19 on Saturday March 19, 2005, 06:11:44 AM
Hi Trish,

Sorry I can't help, as I have only just been diagnosed and have not tried this treatment. I hope all goes well for your son. I agree with Angela that it is important to get a good GP. I am very lucky in that my GP is a dermatologist and I know that I will get the right treatment. (I think that there is always a bit of trial and error with skin disorders)

Good Luck

Karen.
Title: Re: Pityriasis Lichenoides Chronica
Post by: peterb on Saturday March 19, 2005, 06:15:35 AM
Hi Trish

Welcome to the forum.
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Monday March 21, 2005, 05:34:27 PM
Hi Trish,

Sorry to hear about your son.  My daughter will be seven this summer and has had PLC since she was 2.  I also highly recommend a pediatric derm.   People usually have to drive far to go to one.  We used to live in Boston, so there was one right there.  But now, we live in Florida and have to drive over 2 and a half hours to Jacksonville, to see a pediatric derm.  Luckily it is only once or twice a year.  Definitely worth it though.  It is such a comfort to talk with derms who have actually dealt with this condition though. 

I discussed erythro....(can't remember the full name) with me pediatric derm on a couple of occassions.  I can't speak for PLEVA; however, for PLC, they said that it really doesn't seem to do anything (at least in their experience).  They also thought that we should "let it run its course", since it supposedly clears up by puberty (I pray they are right).  They thought that it was more detrimental to be giving her antibiotics for months on end, particularly when (according to them), there is no benefit.  My pediatric derm (the one in Boston) had quite a bit of experience in PLC, and also recommended against using UV lights, since, again, our children are so young.  My daughter's rash doesn't irritate her (physically at least), although she tends to have dry skin, which I have to lubricate.  My derms both said though that a little summer sun would be a good thing for her though.  I don't let her sunbathe, but she does take swim lessons in the summer.  I slather on SPF 30 on her, but the sun is quite strong here, and she does get a bit of colour.  It does improve the rash a lot, at least for a few months. 

Can you describe to me your son's rash, and how did it start out?  Did he have biopsies too, or did they just go by sight?  On the first page of these postings, you can see a summary of my daughter's story. 


Also, Janus.  You mentioned desowen helped you.  In what way did it help you?  Did it make the rash go away, or did it help with the scaling factor of some of the spots? 

Sincerely,

Jahanara
Title: Re: Pityriasis Lichenoides Chronica
Post by: Janus on Friday March 25, 2005, 11:43:32 PM
Hi Jahanara !

The first time I had PLC and I used desowen, the spots disappeared completely. I mean the whole thing went away. Now that I have PLC all over my torso and both arms, it doesn't work.
I live in Texas and there is a lot of sun here. I am waiting for the summer to have this horrible red spots burn out of exitence (or so I hope....)
Title: Re: Pityriasis Lichenoides Chronica
Post by: Janice on Tuesday March 29, 2005, 12:29:17 PM
they are scaly but not itchy, im still waiting to see derm
janice
Title: Re: Pityriasis Lichenoides Chronica
Post by: Mella on Tuesday March 29, 2005, 02:37:58 PM
Hi everyone...Hope you don`t mind me butting in...I was diagnosed 5 years ago with PLC.  I took anti-biotic for about a year and couldn`t stand it anymore!  I was afraid i was weakening my immune system being on it so long. I did the "light" treatment  for a while too...neither worked for me unfortunatley. At this point I take nothing for it. I have noticed that a few of you say that you don`t itch or if you do it`s because of dry skin. I itch terribly all the time...the spots themselves. I have them in all stages of the disease on my body all the time. I `ve found that it`s the "new outbreak" that is itchy.  Has anyone else noticed this? I have never had a scar from any of them either...and I`m so bad with picking off the flakes! I have found the best thing to put on my skin for them is cocoa butter creme (creamy coconut from bath and body works) I feel bad for all who suffer from this disease....especially the children....my prayers are with them all!
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Monday April 04, 2005, 01:07:10 PM
Hi Janus,

You said that the desowen cleared up your rash completely the first time.  Was it a biopsy-diagnosed PLC, and how extensive was it?  I have tried a couple of steroid creams on my daughter early in her diagnosis (flucocinide, hydrocort), but it didn't work. 

Hi Mella,

You said that you have had PLC for five years, everywhere.  Does it present on your face, or is it pretty much on your body?  My daughter's spots don't itch, but her pediatric derm said that with PLC, some people do itch alot (the actual spots).  How old were you when you got PLC, and what else did they say to you about prognosis, etc...?



Take care everyone,

Jahanara
Title: Re: Pityriasis Lichenoides Chronica
Post by: Karen19 on Tuesday April 05, 2005, 07:42:27 AM
Hi all you fellow Pleva/PLC sufferers. On the itch question Mella, I agree that the newly emerging spots are the worst...Somewhere between an itch and a burn...I always know where they are going to appear next.

Karen.
 :crazy:
Title: Re: Pityriasis Lichenoides Chronica
Post by: Mella on Wednesday April 06, 2005, 12:46:10 PM
Hi Jahan
    Yes I`ve had PLC for 5 years.....I`m 34, so i was diagnosed when i was 29. I guess I`m lucky in the sense that i don`t get any "spots" on my face. once in a while i get them along my jawline. They tell me they have done everything they can for me at this point. I take other meds for illness i`ve aquired since the disease and I don`t like to take meds so I just deal with the PLC. Although I have noticed that with my newest outbreak, Some of the "spots" are larger then I`ve ever seen. I have one in particular on my inner thigh that is about 1 1/2 inches round. That makes me a little nervous. So I`ll be taking a trip to the derm.

Hi Karen
     The itch is terrible. I fear I`m having yet another new out break...I just want too tear my scalp apart! for some reason, My scalp is the indicator as to when I`ll get new spots. Then the itching starts everywhere. I believe they are stress induced as we were just flooded this weekend.....3rd time since september! "sigh"

~Mella
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Tuesday April 12, 2005, 10:39:14 PM
Hi Mella,

Let us know what the doctor thinks about that large spot on your inner leg..  Hopefully it will just fade away like the others.  Also, you mentioned being on meds for other illnesses acquired since the PLC.  If you don't mind me asking, are they immune-related illnesses, such as lupus or psoriasis, or epstein barr?  Just curious really, since my doctor told me that PLC is an immune based disorder. 

Also, my daughter does also occassionally get them along her jawline.  I used to put steroid creams on those spots (not that the creams did anything, but the doctor suggested it a while ago); the steroid creams caused her to have a case of perioral dermatitis.  No more of that!  I have come to think that nothing works for this condition except waiting it out.  What have your doctors said about the condition, prognosis, etc?

Sincerely,

Jahan
Title: Re: Pityriasis Lichenoides Chronica
Post by: Janus on Thursday April 21, 2005, 02:53:37 AM
Hi Jahan,

The first time it was not biopsy diagnosed, but the derm who saw it recognized immediately, and prescribed desowen; she said nobody knew what casuses PLC, nor why it suddenly disappers. The first time it was only on my torso and not very much extended. The second time it was biopsy diagnosed and the derm recommended a steroid cream which didn't help one bit.


Hi Janus,

You said that the desowen cleared up your rash completely the first time.  Was it a biopsy-diagnosed PLC, and how extensive was it?  I have tried a couple of steroid creams on my daughter early in her diagnosis (flucocinide, hydrocort), but it didn't work. 

Hi Mella,

You said that you have had PLC for five years, everywhere.  Does it present on your face, or is it pretty much on your body?  My daughter's spots don't itch, but her pediatric derm said that with PLC, some people do itch alot (the actual spots).  How old were you when you got PLC, and what else did they say to you about prognosis, etc...?



Take care everyone,

Jahanara
Title: Re: Pityriasis Lichenoides Chronica
Post by: annie marie R on Tuesday May 03, 2005, 05:12:10 AM
Hello Everyone!
My name is Ann-Marie. I'm 23 and i have just been diagnosed with PLC. I have to say it is such a relief to FINALLY know what i have. I am from the UK but at present i am travelling in Australia with my boyfriend. I don't have any travel insurance (there is a BIG lesson there..) and have spent an absolute fortune on doctors/specialists/biopsies/medication that doesnt work etc.
My rash started on my belly then spread to my arms, legs and back. As you all know, PLC is bloody frustrating and upsetting especially when you are in Australia and want to get your clothes off and hit the beach (I have since discovered, of course, that this is exactly what i should be doing).
Anyway, my Doctor suggested that stress was a possible cause. I wonder if anyone else has been told that? I suppose I am a little stressed out but mainly about the rash!! I told the Doc this and he laughed! So i bought relaxation tea and i've been trying to be calm and so far, so good. I think a big part of that is actually KNOWING what is wrong with me. So what i'm trying to say is that maybe chilling out a bit could help us all. What do you think?
Of course i'm going to make the most of the beautiful Aussie sunshine and photo-therapise myself as well.
Couple of questions, though -
How rare is PLC really? Will I be left with scars indefinately?
Anyway,
Lots of love and luck
Ann-Marie :)
Title: Re: Pityriasis Lichenoides Chronica
Post by: Janice on Tuesday May 03, 2005, 08:06:15 AM
i feel so fed up with the patches, i wodnt dare show my legs i know exactly how you feel. im on 3months antibiotics in an attempt to treat
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Wednesday May 04, 2005, 10:03:45 PM
Hi Annie Marie,

I have never heard of a stress link, and my daughter was two when she was diagnosed.  The sun does help, but be careful, because of the risk of skin cancer...My daughter gets sun during her outdoor swim lessons here in Florida.  I still apply sunblock on her (SPF 30), and she still gets a tan which helps the spots fade.  Just make sure you don't get a burn.  Some studies have  linked PLC with lymphoma (very rare supposedly, but good to be aware of). 

Hi Janice,

How are the antibiotics doing now?  I have never tried them on my daughter, since the derms said that they don't work; however, I would be curious if you see any improvement or resolution. 

Sincerely,

Jahanara
Title: Re: Pityriasis Lichenoides Chronica
Post by: Janice on Thursday May 05, 2005, 09:21:15 AM
none at the moment, been on them 3 weeks :- :(
Title: Re: Pityriasis Lichenoides Chronica
Post by: Vivian on Sunday May 08, 2005, 07:08:07 AM
Hello all!
My name is Vivian, I'm 25 and from the land down under.  I too have recently been diganosed with PLC.  My specialist prescribed me with a topical corticosteroid cream - which seems to help a little.  I actually have had my rashes for a couple of years before I went to see a specialist - it never used to really bother me much because it didn't hurt or itch, but lately had seemed to be getting worse to the extent I would be self conscious if I wore something short.  The rashes dont' itch very often, but if they do I think it is due to the dryness of the skin which is usually relieved when I put on extra moisturiser.    The rash is mainly confined to my arms, legs and lower back.   The new rashes form as small red bumps and eventually fade out to light brown (like a scar - and i do get that  scaly flaky stuff..) and then it just comes and goes - never really going away at all!
I am trying to think back to when all this started.. hmm, 2 incidences come to mind. One was when I was outdoors at a golf course on a really really hot day, amongst all the insects. I do recall getting some sort of rash then, but then it sort of went away over a long period of time. The other time I recall was when I went to tropical far north Queensland (where the temperature was 30+ every day, sunny and humid) - I think it was ever since that time, the rashes have never fully disappeared.  I have noticed that my condition gets worse in really hot weather (ie - i get more new red spots) and that hot water is bad for the rash (i have had the recent experience where my rashes 'burn' if the water is too hot - darn... bye bye to nice hot showers...  >:( ) but that was after i went swimming in an indoor pool - not sure if chlorine had anything to do with making the rash worse?!
My dermatologist has informed me of other treatments - erythromycin and tetracyline.  However, coming from a science background, I have issues with the overuse of antibiotics and the risk of increasing bacterial resistance to these drugs and have declined to use these treatments. 
It's really frustrating that there is no known cause - hence there is no known cure.  More research i say!  All i know is that it's some sort of a inflammatory disease (cell mediated inflammation?) of the skin.
Anyway, good luck to u all out there!
Vivian
Title: Re: Pityriasis Lichenoides Chronica
Post by: David002 on Monday May 09, 2005, 12:50:57 AM
I have been diagnosed with pityriasis lichenoides as well. It has been getting progressively worse. The doctors say it looks somewhere "in between" the acute and chronic form so it may take a while to clear up.

I have been on two grams of tetracycline for a while and about a week ago started tacrolimus on my left calf and arm, so far no luck.

Has any one actually used something that made a noticeable difference? I am thinking about just letting it run its course, as much as I hate how it looks.
Title: Re: Pityriasis Lichenoides Chronica
Post by: Angela7 on Thursday May 12, 2005, 01:08:10 AM
David - there were some posts a while back by a few Pleva sufferers who were having great success with Acyclovir - an anti-viral that has been used successfully for years for things like Herpes and Zoster outbreaks.  I am hoping that they will check in and let us all know how they are doing.  I keep imagining that they are doing so well that they don't visit the site anymore :) 

My ped. derm thinks my son (5 1/2 and has has PLeva since he was 2) is still a bit young for its use but I think any adult would be a-ok for trying it.  I have always thought that my son's Pleva acts a lot like a virus - he gets spots whenever he is sick or immune compromised.  The sicker he is the more spots he gets.  Were you sick or ill when you had your first outbreak?

SUN is a real lifesaver for us - the browner he gets the less spots he gets.  I also think the sun acts almost preventitively in that he didn't have a big outbreak until very late in the Fall this year, as opposed to other years when I would cover him head to toe in suncreen and he wouldn't get much sun.  Now I am still careful but let him get sun before applying and try and let him get nice and tan in the summer.  Take care and good luck.  Best, Angela

 
Title: Re: Pityriasis Lichenoides Chronica
Post by: David002 on Thursday May 12, 2005, 07:57:19 AM
Yes - I was actually very sick for about a week after I first noticed it.

I have a long list of possible treatments to try, which I will add acyclovir to. From my reading, it looks like a lot of cases of PLEVA are associated with viral infection.
Title: Re: Pityriasis Lichenoides Chronica
Post by: Brandyqueen on Saturday May 14, 2005, 10:48:44 PM
Hi everyone,
I've been loosely diagnosed as PLC....still waiting to see a derm....could be waiting a while it would appear!
Mine started on my stomach mainly...now all over my legs with some on my arms and back....I counted 50 on my thigh - is that a normal amount??
They aren't itcy...but my scalp is incredibly itcy. But I've looked, and I dont actually have any spots on my head....is that normal too?
I've just had then for about 3 weeks - my first even skin condition...or infact illness at all really at 26years....am I likley to be stuck with them forever?
Sorry, so many questions.
But its been great to find this site.
take care,
ally
Title: Re: Pityriasis Lichenoides Chronica
Post by: David002 on Monday May 16, 2005, 07:53:53 AM
Interesting; I had an ichy scalp for a while, from a few months before to around the time I was diagnosed with PLEVA. I don't know if it's coincidence or not, as it is not supposed to normally affect the head. I just assumed it was dry skin.

At least in my area, dermatologists tend to be booked for a month or more in advance when it comes to new patients. Unless you have a busy schedule I would suggest calling whoever you plan on going to and asking them to call you if they get an opening because someone cancels. I have done that twice now and ended up getting appoitments within a few days. It is important to get a skin biopsy done to find out if it is actually PLC.

You may have it for the rest of your life, but from what I've heard the first outbreak is usually the worst by far.
Title: Re: Pityriasis Lichenoides Chronica
Post by: annie marie R on Wednesday May 18, 2005, 07:30:43 AM
Hey Ally!
Mine started the same way as you (tummy, legs, arms, back etc) and it is normal to have as many as 50 (or more). I know it's not easy but try not to worry too much. The good news is that PLC doesn't affect your general health in any way. I was prescribed corticosteroid cream which has really helped so ask your dermatologist about that.
Take care
Ann-Marie :)
Title: Re: Pityriasis Lichenoides Chronica
Post by: suki on Sunday May 22, 2005, 10:03:18 PM
Hi this is my first post on here!
I tapped in PLC into google and came up with this forum. Reading through this thread is a big eye opener to me and I would just like to maybe put a few your minds at ease, maybe.
I live in the U.K. but was born in the U.S.A.. I was diognosed with PLC when I was in my early twenties. I developed spots on the  inside of my lower arms, tops of my legs with one or two on the  lower legs, and some on my upper chest. Never itched or felt anything from them. Just looked very unsightly.
The spots would last a very long time, go a darker red, then with just a brush of the top a neat piece of white scale would just come off the top.
Then when the spot went away the whole area where it was would be very red, and much deeper red after a bath.
It took many trips to a specialist to get an answer as to what this was. But then I was told that the few cases they had seen had eventually got better, but they could not tell me how long it would last or even if it would all clear at all.
Well I chose to have no treatment, and as you know we don't have a great deal of non stop sun in this lovely country! But after about a year of covering my arms etc. it slowly cleared.
I am 42 now.
The area where it seemed to start, my right lower arm always has one or two grouped together, and I get the odd one anywhere around my body, but nothing to worry about.
I will add that as far as I know I have no allergies, have never had any other skin complaints. But thinking back to the time I developed this condition I had come out of a very stressfull relationship, and my father died suddenly.
I just hope this post might bring a little light at the end of that tunnel for some of you and yours, and I truly hope you all get an improvement soon. ;D
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Wednesday May 25, 2005, 05:54:15 PM
Hi Suki,

Thank you for your very encouraging email.  (My daughter who is nearly seven has PLC).  I just wanted a bit of clarification though.  You said you got it in your early twenties.  Your description (including the redness, scale, dry skin, etc...) sounds exactly like my daughter.  You mentioned that it cleared up after a year (?)  That is the part I am not clear on.  Did it clear up after you had it for a year, or did it just clear up a year ago (so you would have had it for approx 20 years, since you're 42).  Did you every try any meds?  It sounds like you just let it run its course (which is what my doctors seem to be saying is best).  Also, you mentioned that you still get one or two spots.  Is that all the time, or just every few months?  How extensive was your rash at its peak? 

Thanks for the additional info! 

Sincerely,

Jahanara
Title: Re: Pityriasis Lichenoides Chronica
Post by: suki on Friday May 27, 2005, 12:05:49 AM
Hi Jahanara,
Sorry I meant the condition cleared after about a year getting it. I have mainly been clear since then.
I always have one or two spots in the original area it cropped up on, the lower right arm, Always, I have a little group there right now. But it doesn't worry me now as I have come to know it won't get any worse.
Although I was offered sun bed treatment and steroid creams I decided to let it take it's own course, the reason being the specialist said that if I ceased using these it would all come back just as bad, so I thought there was little point. They really did not know which way it would go or indeed if it would clear or not.
At it's worse it covered my lower arms, not quite so bad on the upper arms, and as far as I can remember on my chest area, one or two on my lower legs, ( I still have red patches where they were on my legs for some reason), and some on the tops of my legs.
I was very depressed when it was at it's worse, and would cover any parts of those affected as it looked awfull.
I never had any reassurance of it going away in the future, but at least this might give you a glimmer of hope.
And do you know my friend has recently developed a very similar rash on her arms and is going to the doctors soon to find out what it is, but by heck it looks like PLC.
Hope this helps, and at least your daughter is at an age where she won't be bothered about the cosmetic side of it, I was at the age where my appearance meant everything. Not that it doesn't now, but you know what I mean? ;D
Title: Re: Pityriasis Lichenoides Chronica
Post by: ulla on Friday May 27, 2005, 01:23:19 PM
hi everyone.  I too was just diagnosed with PLEVA yesterday.  My derm did a biopsy because he thought it was pityriasis rosea, but wanted to rule out guttate psoriasis ( althought it looks just like the pictures I have seen of pityriasis rosea).  He said my case does not look like any of the other cases he has seen.  He was surprisedby the diagnosis of PLEVA. ( by the way, he is a great doc)  I am wondering if they could have made a mistake with the biopsy and it is easily confused with piyriasis rosea in the lab????  ANyone every heard of this type of thing?
Anyway, mine first started as a larger patch under my breast and then I started to develop other spots over about 3 weeks.  They are slightly raised and start out as a dot and then get bigger.  They peel a tiny bit in the center, but do not get crusty or terribly red.  I have been out in the sun and 75% are almost gone.Some are completely gone and you can't even tell where they were.  You have to look really close to see them at all.  I got them on my stomach, sides, back and two on the tops of arms.
I am scared that this is going to completely clear and then come back again even worse.  IS that how it works?  I'm also scared of this lymphoma stuff.  Are any of you guys depressed about this?  Please respond as I would like to hear if anyone's PLEVA has looked like what I described.  Also, if you look at Atlas of Dermatology.....my rash looks JUST LIKE the pictures there of pityraisis rosea.  That will give you a good idea of what I am describing.  THANKS SO MUCH FOR YOUR TIME!
Title: Re: Pityriasis Lichenoides Chronica
Post by: suki on Friday May 27, 2005, 11:56:57 PM
Hi Ulla,
Your condition I cannot help with, but it sounds very hopeful that it has cleared with the sun. If it does try to come back could you not go under a sunbed then? Seeing as you have had a positive result.
I really hope you get some answers on here soon
Title: Re: Pityriasis Lichenoides Chronica
Post by: ulla on Saturday May 28, 2005, 12:19:18 AM
suki.............did you have any spots that were just slightly raised, pinkish-red and only slightly peeled and then faded totally?  or did yours look more like chickenpox?
So, your initial flare was by far the worst?  Would anyone even notice it on you now?
Title: Re: Pityriasis Lichenoides Chronica
Post by: ulla on Saturday May 28, 2005, 12:21:44 AM
by the way, I mentioned I was diagnosed with PLEVA........in case you didn't know that is the acute form of pityriasis lichenoides. 
Title: Re: Pityriasis Lichenoides Chronica
Post by: suki on Saturday May 28, 2005, 09:36:32 PM
Ulla I didn't know that. Yes some of my spots were like that and yes they did completely fade.
And no they really would not know there is anything wrong. What I have now is just like a very small patch of tiny spots that don't really come to anything, and at the moment I have one larger one that is flaking slightly and is quite red but only in the very middle.
As I say this little area is always there, but you would never notice it unless you had a hard look. Ooh just looking at my arm as I am saying this and I have a larger one coming up on the inside of my arm on the bend. See? just the odd one always, but really doesn't concern me now. My other arm is completely clear at the moment.
At their worst it was a mixture of larger angry looking spots that would flake then probably flake again, underneath was very red, but never looked like a sort of crater, it was mainly flat off the top. Mixed with these were smaller ones that didn't really get very bad, but had a little flake come off, just a tiny bit.
The few I had on my lower legs would come up, flake like the others, but where they had been a large red area would be left, and indeed I still have this red area on part of my lower leg.
Title: Re: Pityriasis Lichenoides Chronica
Post by: ulla on Saturday May 28, 2005, 09:48:22 PM
suki ( or anyone else...) did the sun ever help anyone else's spots.  I'm telling you........it has cleared mine rather quickly.   Also, Suki, did you have a chance to look at atlas of dermotology under pityriasis rosea?  The clinical pictures there look just like my spots.  IF you get a chance I would love to know if that is mainly what your spots look like also.......that question is for all of you out there.  I would love to know.
Suki, did you ever get more than one bad outbreak or was it just the first outbreak that was bad?  I am sorry for all the questions, but this thing is weird and I have no one else to ask.  Do you worry about this lymphoma connection?  (although I gues it is rare).  I'm a worrier, so it scares me a little.
One more question..........have you ever been TOTALLY spot free?
Title: Re: Pityriasis Lichenoides Chronica
Post by: suki on Saturday May 28, 2005, 11:40:28 PM
Ulla, I did have a look and it doesn't really look like what I had.
I only had the one outbreak. And it's a bit hard to say whether the sun helped me as I was so concious about my arms I covered them up all the time.
It is hard to say whether I have ever been totally sot free as it is often so sparse I just don't really notice. I think I probably have been.
I havn't heard anything about the lymphoma connection. But I think I have had such a mild case, and it has been a good 25 years since the one and only outbreak that doesn't really concern me.
I will have another look at the atlas though at the rosea to make sure it isn't like mine. I know it sounds crazy but it was a long time agao I had it and those pictures on there are a hell of a lot worse than I remember having it.
I think I have been lucky.
Will let you know.
Title: Re: Pityriasis Lichenoides Chronica
Post by: suki on Sunday May 29, 2005, 12:14:47 AM
Well not quite 25 years but about 20 years.
Well  I have had another look at the rosea and it doesn't quite look like mine.
Mine did not seem to have such a 'spread' as those on there. The spot I have now that has been with me for a little while is very small, dark red, doesn't stick out very far, and I think the scale part must have come off to reveal a smooth, shiny, underneath.
The one that I just noticed earlier is a very faint red, slightly raised area. This one is a bit bigger than my older one.
I really have absolutely no actual knowledge they are there apart from seeing them. They do not itch or hurt.
It is very difficult to say, but in that atlas even the PLC photos didn't really look like mine, well they did but looked much worse than I remember mine being.
Title: Re: Pityriasis Lichenoides Chronica
Post by: ulla on Monday May 30, 2005, 12:52:21 PM
suki.........did yours get diagnosed by a biopsy or did the doctor make the diagnosis from its appearance?  How is this new outbreak?  Is it as bad as the first?
Title: Re: Pityriasis Lichenoides Chronica
Post by: ulla on Monday May 30, 2005, 12:54:25 PM
suki...sorry, I thought you had mentioned a new outbreak.......I'm getting everyone confused.....sorry.  So, you always have a few spots?  Do you still see the derm for this condition?
Title: Re: Pityriasis Lichenoides Chronica
Post by: suki on Monday May 30, 2005, 11:14:46 PM
No ulla, I was  just diagnosed by a specialist. I always had a small group of students or other derms who wanted to have a look at my 'strange' condition.
No I havn't seen anyone about it since it cleared. Still got just the two spots, one is still in it's infancy and the other is fading with dry skin just around it, but still like a little pimple.
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Wednesday June 01, 2005, 10:11:34 PM
I had a quick survey to do for all us PLC-er, to also get some clarification on what I am seeing on my daughter. 

1) Does any one have flaking of skin (not spots though) on lower lobes of ears and beneath eye brow area?

 (Ever since my daughter has had PLC, I have noticed this.  I tried Elidel a couple of times, but didn't notice anything substantial.  I didn't want to use a medication on her, and now use a tiny bit of cetaphil (hypoallergenic moisturizing lotion) which seems to do as much (or as little) as the Elidel.  The flakiness doesn't bother her, but it is there. 

2) Is anyone's skin extremely sensitive to fragranced lotions or lotions with preservatives (pretty much all of them)? 

I have to put petroleum jelly on my daughters skin (all over, except face, three times a week), because her skin is so dry.  The petroleum jelly is great.  I tried "hypoallergenic dermatologist-approved, fragrance free stuff, but it always stings her skin.  Prior to her having PLC, I didn't think fragrance filled lotions bothered her. 

3)  Does everyone have rather dry skin overall, since they have had PLC? 

My daughter's skin seems perpetually dry if I stop regular moisturizing.   I can't decide if it is because of the flakiness from the PLC, or what...

4)  Does anyone get spotty on the face? 

I have been told that PLC is characteristically not associated with scalp, face, palms or soles, however, she has always had a tendancy to get the occassional spot along her jawline/chin area, nothing too major luckily. 

Also, someone was worried about the whole lymphoma thing...(I think it was Ulla).  When I first found out about it, I obsessed a little, imagining my poor little daughter in the chemotherapy ward (the thought made me nauceous and slightly panicky); however, I decided that I just can't worry about it.  (It still does concern me, mind you, but I just try to be positive).  I know a couple of people with regular psoriasis, and those people too are supposedly at increased risk for lymphoma.  Somehow it made me feel calmer, because the psoriasis people I know are pretty calm and healthy.  Also, I try to tell myself that the lymphoma risk is still extremely low.  Besides, anything can happen in life, and I could get hit by a car tomorrow....

Take care everyone.

J
Title: Re: Pityriasis Lichenoides Chronica
Post by: Angela7 on Saturday June 04, 2005, 02:40:08 PM
Dear Jahan - in response to your questions, my almost 6 year old son has had PLEVA since he was 2.  Just like your daughter he has very dry skin all over and especially around his ears.  In fact, he frequently gets cuts where the back of his ears meet his head that require bacitracin or neosporin to help heal.  As a little guy his scalp was so dry that he had terrible scaly cradle cap.  He has used Head and Shoulders since he was little and that helps a lot.  He too gets spots on his face sometimes and they tend to be the worst kind that are very deep and scab and then leave pitted scars - usually he will get them under his eyebrows, although usually only one or two at a time (when the rest of his body will be covered).  A & D works best on his scabs and seems to help with the scarring. 

Sun is our savior and we are happy that the summer is here.  This is actually the first summer that he will be starting the season with very few spots.  I cannot descern a difference from the last number of years but he himself noted the other day - "hey mom, my scabs are almost gone" 

If I may ask you some questions to see if there are other common factors with our kids - The answer to all of these questions for my son are Yes - Did your daughter have to take a lot of antibiotics at a young age?  Has she had to have her tonsils out?  Does her Pleva seem to operate like a virus that appears when she is sick or otherwise immunocompromised?  Any allergies or sensitivties to milk?  Did it first appear when she was sick? and/or in close proximity to receiving the chix pox vaccine?

Has anything worked for you guys to help clear it up? My son can spend the better part of the three non-summer seasons covered with spots.  For us, him getting it when he was so little has actually been a real blessing since he has always had it.  Although I imagine it gets harder and harder the older they get. 

I am always so happy to talk to and get advice from a fellow Pleva mom.  Thank you so much for your time and insight.  Best,  Angela     
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Sunday June 05, 2005, 08:02:27 PM
Dear Angela,

My daughter actually has the chronic form of your son's condition.  From what I understand PLEVA is the more acute, scabby form that supposedly resolves in a shorter time.  My daughter's chronic form (PLC) is milder (in the sense that there are no scabs, pussing, etc...., but just spots with a bit of scale on them).  I have been told that the chronic form of PLC can take typically longer to resolve.  Also, she always has the spots, and it is not as "outbreak-like" as PLEVA.  Still, these are two conditions in the same family. 

Sun is great.  We used to live up north in the Boston area, where we didn't get out until summer.  This past year we moved to sunny tropical florida.  During the winter where it is still so warm, her arms and lower legs were not that bad; however, she still had a good distribution on her upper legs (particularly in the back) and torso.  We are just entering summer, and I will be starting her on swim lessons, so we shall see what happens. 

I only use petroleum jelly, which is similar to A&D.  I dont' think it makes the spots go away any faster, but it does "smooth" out her skin with the dryness and flakiness. 

I am so glad your PLEVA seems to be better this year.  I have always been told by pediatric dermatologists that though PLEVA is worse (with scabbing, etc), it does typically resolve quicker.  I will keep my fingers crossed for your son!

Also, my daughter hardly took any antibiotics at a young age.  She was just under 2 when the chronic PLC started.  I don't notice more spots if she is sick or anything.  She just always has them.  (I have heard that PLEVA can get worse when kids are sick).  She also has her tonsils.  No food allergies, eats well, etc...   As far as the vaccine, I have heard of the connection; however, the rash came in march (she was 20 months old), and she had last had vaccines on her first birthday, months earlier.

Let me know about your son, allergies, etc...

Also, how old was he when he got it?

Take care,  Jahan
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Sunday June 05, 2005, 08:27:31 PM
Angela,

Sorry I had to cut my earlier response short; I did read after that your son has had PLEVA since he was 2.  What did the doctor say?  Have you a pediatric derm in the area?  We used to live in Boston, so we had the best doctors right at the doorstep.  Now that we are in Florida, we have to drive two and a half hours (luckily only once or twice a year for the standard skin checkup) to a pediatric derm in Jacksonville.

I know exactly what you mean about it being good that he got it young.  My daughter was around the same age when she got it.  She is going to be seven this summer.  The rash on her body is all she's ever known.  They say I have to wait until just before or around puberty (or around age 10) as that is when it typically (fingers crossed) clears up.  What did they give your son for a prognosis?  I get the impression that the more acute PLEVA seems more common in children than the chronic form, although I am not sure.  I don't know any other mums with PLEVA or PLC kids, so it is nice to chat with someone.  Sometimes I worry about it alot, and other times, I go for weeks without giving it too much thought.  I try not to let me daughter know that I worry about it, since the rash (although at times, she mentions the appearance), doesn't overly bother her much. 

My pediatric derms say to keep waiting it out...and let it run its course.   

Take care,

Jahan

 
Title: Re: Pityriasis Lichenoides Chronica
Post by: Angela7 on Thursday June 09, 2005, 02:08:31 AM
Hi Jahan - Ah Florida - that sounds so nice with year round sunlight.  We are stuck in the Northeast and only get sun during the summer months.  But I have taken to waiting for at least 10 or 15 minutes without putting sunscreen on my son and he gets nice and tan (and clear!).

I too find the whole Pleva/PLC distinction hard to understand.  Our ped. derm says there is basically no distinction anymore once the rash returns or never goes away it is all the chronic form.  But it sounds like we do have times without spots while your poor daughter doesn't ever get a break (but no scabs is a plus I suppose as far as all this stuff goes).

Our Dr. also swears by the puberty change and claims that 75 % of kids who get Pleva young will get rid of it by that age.  They don't seem to know why it just burns out but it seems to in a lot of cases.  Let's keep those fingers crossed!

My son is sensitive to cow's milk, had his tonsils out when he was 4, had a lot of ear infections and had to take a lot of antibiotics at a young age (they started after he weaned at a year - so much for nursing making kids healthier) and had the chix pox vaccination a few months before his Pleva appeared.  Other than that list, not much else that sticks out.  He is kind of an intense little guy and I have heard adults w/ Pleva say that stress exacerbates their rash.

My ped. derm mentioned recently that a Dr. in Canada is starting a registry to track Pleva kids.  Obviously I am very interested and she is supposed to get back at me with details.  I will definately let you know if I hear how to register.  Imagine people actually doing some research about it - now that would be nice.

All my best and take good care, Angela   
Title: Re: Pityriasis Lichenoides Chronica
Post by: Sha on Thursday June 09, 2005, 07:34:26 AM
Jahan,

Have you ever tried Aquaphor in place of Petroleum Jelly?  I use it for everything & I love it!  My son has always had very bad eczema & went through Chemo for Lymphoma at 2 years old.  I started using it on him at the hospital & his Oncologist was very impressed with the fact that it helped alot more than regular Vaseline.  If, you decide to try it of course make sure to read the label for allergies.  Good Luck!

Sha
Title: Re: Pityriasis Lichenoides Chronica
Post by: Lucy Crompton on Monday June 13, 2005, 11:41:38 AM
Dear fellow PLC sufferers!

I live in the UK and have recently been diagnosed with PLC, after seeing various doctors for this condition over the last four or so years.

My spots are mainly on my stomach, back and inner arms, but it has changed location and appearance quite a lot over the years.

I used a steriod cream a while ago which helped whilst I used it, but the rash came back just as badly afterwards. As I have reservations about using steriod-based medication anyway I'm reluctant to use it again, which my dermatologist understands. I've been offered phototherapy, but again the condition is likely to come back within a month...and again there are associated dangers.

So, I've resolved to try and address it through natural therapies. I am currently trying aromatherapy (using essential oils), and will let you know if I have any success!

I thought the connection with lymphoma was not really very well-founded, however my mum died last year of lymphoma, and so I am going to ask my derm about this connection when I see her in August. She's really helpful.

Lucy
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Monday June 13, 2005, 05:59:13 PM
Hi Angela,

You mentioned you were in the Northeast...with your pediatric derm.  My pediatric derm up there (before we moved down here a year ago) was Dr. Gellis at Children's in Boston.  Who is yours?  Dr. Gellis seemed to have a lot more experience with PLEVA/PLC, compared with my current doctor here (she has only seen a couple of cases).  I remember Dr. Gellis seemed really confident about the whole puberty thing, since he had supposedly seen it clear up numerous times.   (I guess one reason I loved Dr. Gellis so much was that he seemed so experienced with the whole PLC/PLEVA thing, and so confident). 
I also understand PLC/PLEVA to be the same disease but at opposite spectrums.   Sounds like my daughter has alot more spots than yours does, although hers never pus, itch or scar. 

My daughter just startedher swim lessons today.  Sun is so intense here in Florida, so I still put sunblock SPF 30 all over, and she still will get a little colour (and rash fading) over the next couple of weeks, hopefully. 


Hi SHA,

Where do I get aquaphor from?  Never heard of it, but I will try it if it spreads on easier than petroleum. 


Hello Lucy,

From what I understand, the whole lymphoma connection is not strong; I get the impression that it is similar to the risk psoriasis people have with lymphoma; still considered rare.  Still, let me know what your derm's opinion is in August.  Good luck!

Sincerely,

Jahan
Title: Re: Pityriasis Lichenoides Chronica
Post by: ali2 on Tuesday June 14, 2005, 02:38:04 AM
Hi all...I have tried to read everyone's posts and catch up on this thread...I'm new to skincell and was just diagnosed with pleva.  I'm actually waiting on the stain to come back on the biopsy...it first revealed lymphomatoid papulosis, but my dr. thinks my condition more resembles pleva and they didn't do the stain required to distinguish between the two.  My rash seemed to erupt one day and continue to get worse over the following weeks.  I've had it for 3 wks. now.  It looks to me like a severe case of the chicken pox all over my stomach, lower back, inner arms, and a few scattered on my legs.  Luckily none on my face.  Some of the orginal spots seem to fade but crops of more keep coming up and they seem itchy when they first erupt.  I'm 26 yrs. old and have never had any other skin problems whatsoever.  But I do find it interesting that some of you are discussing your children's sensitivity to milk...both my sons have had a sensitivity to milk...my 4 yo has outgrown it but my 1 yo cannot have any milk products as it causes him to have bad eczema flare-ups.  This is all new to me, so I'm just trying to put things together.  The only thing I can really put my finger on is that I came down with a really sore throat back in Feb. and my glands in my neck became swollen.  Strep was neg. and the sore throat got better within a few days but I continued to get occasional sore throats right up until this skin thing.  So I'm thinking it has to be related somehow. 
My big question is what are the distinguishing factors between the acute form and the chronic form?

Allie
Title: Re: Pityriasis Lichenoides Chronica
Post by: Angela7 on Tuesday June 14, 2005, 04:27:16 AM
Dear Allie, so sorry to hear about your diagnosis.  It is indeed a frustrating and strange condition to track and understand (my son has had it since he was 2 - he is now 6).  He got his first outbreak after getting strep 2X in a short time - in fact they thought it was a strep rash at first before they did the biopsy.  He had also had a lot of ear infections the year before and had had to take a number of rounds of antibiotics.  He has a sensitivity to cow's milk.  He can eat cheese but can't drink regular milk without throwing up.  Sunlight is the only thing that seems to help his spots clear up so maybe some summer sun will do the trick (his tend to get redder and rawer at first in the sun but then dry up and heal faster).  Jahan seems to understand the PLC/Pleva distinction really well so hopefully she will check in soon and explain it.  My son's pleva comes and goes but he usually has spots in the 3 non-summer seasons.  His spots are all over his trunk and a few can get quite deep and scab and leave scars.  He only occasionally gets them on his face.  The rest of the time they tend to be mostly on his belly, back, legs and inside of elbows.  His underwear region is always the worst (no sun ever?).
The sun even seems to help keep the spots at bay because the more sun he gets in the summer the longer he will go into the Fall without spots.  I often ask myself what does the sun give his body that helps?  What can I add to his diet (he is a great healthy eater) to replicate those effects.  Any ideas out there?

Hi Jahan - we live near NYC and used to go to the best ped. derm at Columbia-Pres. Hospital.  I loved both Dr. Kimberly Morel and Dr. Maria Garzon - they have tons of Pleva kids and are real experts in the area.  But our insurance just changed and they don't take my new insurance so I am sadly looking elsewhere.  Both of them also swear by the puberty change with Pleva kids and they are the ones that kept telling me 75% who get it young will outgrow it.  My sister is a Dr. and always says that going to a large metropolitan teaching hospital is the way to go with something rare.  They are much more into research and more likely to be in the loop if any studies or reserach is being done.  Hopefully you can find someone like your Boston Dr. down there.  I just wish someone would really study this thing.  That way the "miniscule" lympohoma links would hopefully disappear - apparently that study/link was done on a very tiny population and no one knows if there is even a real link because the study's numbers were so small.  So until someone does a real study over time with a bigger population, I choose to ignore that . . . just like a mama ostrich would do I guess :)  Take care and all my best, Angela   


 
Title: Re: Pityriasis Lichenoides Chronica
Post by: Sha on Tuesday June 14, 2005, 06:00:20 AM
Lucy,

Welcome to Skincell!   :hi:

I am very sorry to hear about your mother. :hugs:  I have a 5 year old son that is a Lymphoma Survivor.  He was diagnosed at age 2.  His type was Burkitt's Lymphoma.
I really hope that you benefit from the aromatherapy.  Keep us posted!

Sha   :hugs:



Jahan, 

You can purchase Aquaphor from Walmart.  It is near the hand lotions.  It is in a white tube with blue & a litlle bit of red writing on it.
I do have the # for questions or comments for you also.  It is 1-800-227-4703.  It is from the same manufacturer as Eucerin. (Beiersdorf Inc.)
Hope you like it.  If you can't find it let me know & I can help you locate it.

Sha   :hugs:
Title: Re: Pityriasis Lichenoides Chronica
Post by: ali2 on Tuesday June 14, 2005, 03:58:15 PM
Dear Angela, thanks for all the advice...I'm going out to get some sun now!  Is it Vitamin A that the sun gives you?  For some reason, I'm thinking it is.  Maybe that is why some people use Retin A for acne.  Vitamin A supplements are a thought?  Anyway, I know I read somewhere that the disease occuring in childhood is more predictable and almost always clears up by puberty.  That probably seems like such a long time for your son but at least there is an end.  My 4 yo also got multiple ear infections and is on his second set of tubes but it seems like my younger son has more of the skin problems.  I just hope Drs. continue researching it...it's so discouraging that there is so little info about it. 
Thanks again, and take care!
Allie
Title: Re: Pityriasis Lichenoides Chronica
Post by: Angela7 on Thursday June 16, 2005, 03:45:14 AM
Hi Allie - I just wanted to mention that my son's rash takes a few exposures to the sun to start to notice any effect and dry up and heal.  After he gets sun the first few times in summer the spots sometimes look worse (redder, rawer, etc.)  So give yourself a few days to see if sunlight helps you.  It doesn't take a lot and you should of course be careful at first but I always wait 15 or 20 minutes without putting sunscreen on him and try to start him off either in the morning or later afternoon when the sun isn't so strong.  Most Pleva sufferers greatly benefit from sunlight and even get UVB light therapy if sunlight isn't available year round but I have heard of a few people who say the sun makes it worse.  If I had only let my son get sun once or twice I might have drawn the same conclusion so I wanted to mention it to you.  Hang in there and keep up your great positive attitude!!  Best, Angela 
Title: Re: Pityriasis Lichenoides Chronica
Post by: ali2 on Thursday June 16, 2005, 02:12:58 PM
Angela, you are right about the sun thing...I went out on Tues. for about 45 min. and that evening I thought "Oh no what have I done!" But today, I'm thinking it's looking a little better.  I'm definitely going to give it another try.  Have you found a good sunscreen that is gentle and non-irritating??
Title: Re: Pityriasis Lichenoides Chronica
Post by: Angela7 on Sunday June 19, 2005, 04:15:21 AM
Hi Allie - sure hope that you are starting to see the sun's amazing effects.  As I said, sometimes it takes a few times to see any difference.  Whole Foods grocery stores sell a great sunscreen (they have one for kids and adults - the store brand) that doesn't irritate my son's skin too much.  I have also used coppertone's sensitive skin sunscreen if I run out (although it isn't waterproof, just water resistant).  Keep us posted - I sure hope the sun helps!!!  Best, Angela 
Title: Re: Pityriasis Lichenoides Chronica
Post by: ulla on Wednesday June 22, 2005, 12:26:57 AM
hi everyone.........I haven't posted in awhile but I wanted to give an update on my "PLEVA"....I was just to the derm today and my rash has been totally clear now for 2 weeks....no spots left at all.  I discussed an article that I found in the archives of dermotology with him..........the study was on 46 people diagnosed with PLEVA and they found that 28 of them were incorrectly diagnosed by the biopsy.  The derm feels that the same thing has occured in my case and that his original diagnosis of pityriasis rosea was correct, since my rash looked like that and followed its expected course.  He told me that biopsies are often incorrect....scary, but true.....and that the general rule is that if the biopsy results do not match the clinical picture, you disregard the biopsy rather than the clinical diagnosis.  So, I say this in case any of you have an atypical clinical representation of PLEVA, as I did, so you may want to consider a second opinion.
To offer you all hope, my derm said he has seen many cases of PLEVA in adults that clear and stay gone or only slightly return.
I hope you are all seeing improvement.
Title: Re: Pityriasis Lichenoides Chronica
Post by: Karen19 on Wednesday June 22, 2005, 09:47:47 PM
Glad to here that your skin has cleared up Ulla. My rash was typical of PLEVA and this was confirmed by biopsy..I am delighted that it has now virtually cleared. (no new spots in the last fortnight or so.) I am having ultra violet treatment, which is helping with the remaining blotchiness and I am starting to feel 'normal' again. When it was very bad I thought I was going to have it for years. I hope you don't all get too put off by what you read about PL...Mine only lasted about 3 months.  :D
Karen.
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Tuesday June 28, 2005, 05:52:00 PM
Hello everyone!

This is very encouraging to hear about all the good news!  Please everyone, promise when your PLC/PLEVA clears, you don't just forget about us...please remember to post your happy outcomes.  It definitely gives everyone hope, especially when there is no definite prognosis with duration.

Update on my daughter Tess:   She has been doing swim lessons, and has a bit of a tan.  It really helps her PLC spots, and they have faded.  She still has them of course.  The only thing I have always noticed if she gets a tan, is that the spots fade, flatten and take on a paler colour (hypopigmentation, I think they call it), and that eventually fades out over the course of a couple of months or so.  Have any of you noticed this too?  If my daughter's tan is slight, the contrast is not as noticeable.  Here in Florida, even during swimming, I put sun factor 30 on her and she still gets quite a "good" colour.  So, the contrast between the hypopigmentation and regular skin colour is more pronounced.

As far as the distribution etc... of the rash, obviously the sun has improved; however, I feel like it looks the same as last summer.  The docs told me that I am supposedly meant to see gradual improvement over the years (she has had it since she was 2, and she is nearly seven).  It is hard for me to tell, since I see her all the time. 

A word of advice for parents; consider taking a front/back photo when your child is first diagnosed with something like this.  Do it annually, around the same date, and that way you can compare the distribution, etc... over the years.  I wish I had done this.  I think that her rash was worse when she was three or four, and is now getting better, but I don't know if that is just wishful thinking since I didn't photodocument. 

Take care everyone, and keep the updates coming in! 

Jahan
Title: Re: Pityriasis Lichenoides Chronica
Post by: Angela7 on Friday July 01, 2005, 01:51:40 PM
Hi Jahan - as is usually the case with us my son also has hypopigmentation all over him.  I too think that the outbreaks are getting less severe over time - the worst being when he was 3 and 4 and easier these past 2 years.  I keep a journal for him about outbreaks but also regret not taking pictures - but always worried that it would make him feel weird about his spots, which have become a part of the family for so long now.  He asked me in a worried voice once "where are my little brother's spots?"  like there was something wrong with him for being spotless :)  Gotta love kids. 

I have been much less crazy about the sunscreen this year - waiting 15 or 20 minutes before putting it on him (I used to always slather from the second he was in the sun).  And he looks as clear as he has ever been since getting it - and he had gotten a batch of new spots right before the summer which are already gone.  That's probably hard with the Florida sun but maybe in off peak hours you can get her those extra rays before using the sunscreen.  I've seen a real difference in him.  Thanks for that info about "gradual imrpovement over age."  I had never heard that and just assumed that when they said it burned itself out in most kids that it just didn't come back.  It would make more sense if it was gradual.  Time will tell I suppose.   

Enjoy the summer and take care!!  Angela
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Wednesday July 27, 2005, 12:03:22 AM
Hi everyone,

Just a quick update on my daughter.  She went for her biannual pediatric derm checkup where they suggested a biopsy since it has been several years since she has had one.  My old doctor didn't believe in biopsies unless the spots became atypical.  My new pediatric derm believes that every three or four years a new biopsy is prudent, just because of that whole lymphoma/mf risk (SMALL, I must remind myself).    They took the a biopsy of a scaly flaky spot from her bottom.  Luckily, the pathology just indicated the PLC.  Guess I am hopefully good for another few years.  Now that the doc has seen my daughter a couple of times, she feels that once a year checkup is sufficient.  Have any of you been re-biopsied every few years?  I guess it is a conservative approach. 

Angela, remember you and I were exchanging info on PLEVA and PLC being the same?  (I always used to think they were slightly different, before you enlightened me).  Well, the doctor started talking about how PLEVA and PLC are pathologically (that is, under the microscope) identical, and that they just present in two forms, although people with PLEVA can have less angry PLC spots.  Not usually the other way round.  (I know you already know this, but I thought I would just spread the doc's word around).  The doc also thought that PLC was more common than PLEVA, at least in children.  I remember Angela saying that there were alot of PLEVA kids at the NYC derm office.  So, I always thought PLEVA was more common. 

Let us know how you are all faring out there.

Jahan
Title: Re: Pityriasis Lichenoides Chronica
Post by: Karen19 on Wednesday July 27, 2005, 07:44:53 PM
Hi All,

Glad to here what is going on for all of you. I am sorry to say that I have more spots. I think that my original rash was PLEVA, because it was very severe, but I think I am now showing signs of PLC. At the moment I have sore spots on both risks, (but only 5 or 6 on each) I guess I spoke too soon when I said it had gone, but if it stays at this level it will be manageable....Apart from they look a bit like flee bites, so I am sure that people think I am unclean!

Hope you are all getting plenty of sun, and feeling good.

Karen. :)
Title: Re: Pityriasis Lichenoides Chronica
Post by: Angela7 on Thursday July 28, 2005, 02:55:03 AM
Hi all - thanks for the update Jahan.  I continue to be perplexed by the Pleva/PLC distinction but maybe that's b/c there really isn't a big one?  Whatever the distinction, we have had it for years and pray for the puberty burn out.  I am so glad that the biopsy was a-ok and now you won't have to deal with that for a few more years.  My ped. derm is of the same school and we will re-biopsy in a few months (he hasn't had a biospy since he was diagnosed 3 years ago - I have put it off).  He was so miserable the first one. I shudder to think what it will be like this time - did your daughter need a stitch to close it up?  Last time he did.   

Boy can I see the difference the sum makes this summer.  He is totally covered with spots on his underwear region but wth only a few on his chest and back and none on his face (he gets the occasional deep ones on his face).  What could it possibly be that the sun gives them that makes them go away?  Any ideas?  All my best, Angela   
Title: Re: Pityriasis Lichenoides Chronica
Post by: 7elena on Saturday August 06, 2005, 09:05:52 PM
Hi all. I was diagnosed with pleva in 99, 2 separate biopsies. The initial outbreak covered my entire body. Now, I usually have about 10-20 spots. The best results were achieved with UVA when after a 2 month treatment I had only 4 spots. Usually they clear up in the summer  with sun, and are the worst in March. They are different depth and radius. Some may be very small but go deep and be painful - usually they leave scars. The ones that stay near surface don't scar.
One of my dermatologists recommended methotrexate but I was afraid to take it. He said that the medicine would 'silence' my immune system and hopefully the reaction would subside enough to where my immune system wouldn't remember to attack the skin any more? I felt that the side effects of that drug were too much for me to deal with. Does anyone here have any experience with this drug? Thank you.
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Wednesday August 10, 2005, 05:16:56 PM
Greetings to all!

This is my first visit and posting to this site, I must say that reading some of the messages left here has given me mixed feelings. The symptoms I am experiencing are documented in so many messages and, hopes of a quick and permanent cure are dwindling. I am perplexed by the cause of this malady and why it has struck me. Doesn't everyone? In addition to this PLC I have Multiple Sclerosis -- double edged sword -- the best medicine for the PLC is sunlight but sunlight produces heat that can and will shut down my central nervous system.

I was diagnosed at age 40 with the MS and developed the 'rash' earlier this year, I just celebrated my 49th birthday. I'm really not complaining (I know it could be worse and is for many people), just find it difficult to deal with those (family, friends) who have no idea of what it's like to live my life. My husband was diagnosed with pemphigus a few years ago, so my rash is not unappealing to him. Our home has become somewhat of a pharmacy considering the medications we now need.

I will monitor this site often, but may not have much to say. I have learned more in the past decade about medical health that it's frightening. If I wouldn't fatigue so much I'd consider medical school!

Thanks for sharing your insights, symptoms and thoughts and concerns associated with this nasty skin disease.

Regards,
Elseaeff
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Tuesday August 23, 2005, 09:20:42 PM
Hi everyone,

Just an update on my 7 year old daughter.  Obviously, still spotty, esp. upper arms, upper thighs (particularly on upper back and lower trunk area).  Also to a lesser extent on her belly, lower extremities (just a few, milder).  Have any of you with PLC / PLEVA children had them start to be self-conscious about it?  My daughter just brought it up to me last night, at bed, and feels a little bad when people ask her if they are bug bites, etc...  I feel so bad for my daughter, but tried not to make a big deal of it.  I then went ahead and pointed out other children who have things that are different (one girl with facial discolouration due to burns; another kid with coke-bottle glasses, her own dad who still gets acne, etc...).  I know it made her feel better, and no one has teased her at school or anything.  They are just curious.  How have you mothers addressed these concerns to your children? 

Angela, I have really never seen PLEVA, and I am wondering, if you can describe a typical PLEVA spot to me (a mild one and a more severe one), incl. approx diameter, itchiness factor, etc... I am just curious. 

Earlier in the thread, I saw talk of the sun, and musings about what it gives children that they don't normally have (or something like that).  I could be mistaken, but I think the answer is simply UV.  I know when skin comes into contact with UV, it produces vitamin D, which is fortified in milk as well.  From what I understand, Vitamin D has nothing to do with improving rashes.  It is simply the UV that retards the growth of faster dividing cells (i.e. the PLC/PLEVA).  Please correct me, anyone, as I may be wrong. 

I have never been able to get a straight answer as to what causes PLC/PLEVA.  The closest thing I got was that they don't understand, however, it is a T-cell disorder (whatever T-cells are, something to do with the immune system???).  Someone said that PLC/PLEVA is akin to psoriasis (I have heard that PLC/PLEVA is also called, less commonly, parapsoriasis).  Does anyone have a better idea about this condition?  If it is an immune disorder, then why is my daughter otherwise healthy?  Except for the skin of course, she is rarely sick, eats well, and is full of energy.

Take care,

Jahan 
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Tuesday August 23, 2005, 10:35:17 PM
Dear Jahan,

I am sorry to hear that your daughter is going through tough times. Children can be so mean and inconsiderate at times. I also found myself the butt of many jokes because I was tall and thin. There are some really good books that can help you help her with her self-esteem. "Reviving Ophelia" addresses the way America forces young girls to 'grow up and act their age.' Another is "Queen Bees and Wannabes: Helping Your Daughter Survive Cliques, Gossip, Boyfriends, and Other Realities of Adolescence". Finally, "Odd Girl Out: The Hidden Culture of Aggression in Girls." They may be too hard for your daughter to read at this time, but you can help her tremendously by reading them and learning how to deal with her evolution to a young woman. I know it can't be easy for her, but perhaps these books can help you help her.

Also, I've searched and searched and finally found a description of PLC by a doctor at MCV here in Richmond, "Pityriasis lichenoides is a rare cutaneous disorder of unknown etiology. Pityriasis lichenoides encompasses a spectrum of clinical presentations ranging from acute papular lesions that rapidly evolve into pseudovesicles and central necrosis (pityriasis lichenoides et varioliformis acuta or PLEVA) to small, scaling, benign-appearing papules (pityriasis lichenoides chronica or PLC). Although historically, the term Mucha-Habermann disease has referred only to PLEVA, the term applies broadly to the entire spectrum of disease including PLC. A rare febrile ulceronecrotic variant has been reported, which is a severe form of a longer form or PLEVA which regularity with very high fever and marked constitutional symptoms. Lesions may self-involute and resolve completely over weeks, or new lesions occasionally may appear in crops, waxing and waning spontaneously for months to years thereafter" I've been battling this since March. Years to resolve? I also read that PLC mainly affects children under the age of 7 and wil be outgrown by puberty. Either I'm acting way to young for my age or haven't grown up! Why did it hit me at 50?

Does anyone have a solution for the incessant itching? The PLC has spread to my underarms, belly button, between the fingers, arms, underarms, back, legs, behind the knees,back, behind my neck, on the feet and between the toes. I am going crazy with the itch. I've tried creams, but they make it worse. I'm using Benedryl spray right now, but it's barely aleviating the itch.

The dermatologist is having me stand in her narrow band UVB light box every day. I am also sitting out in the sun (when the temperature permits -- MS can't handle heat). I feel so helpless to help myself!

Ay input will be greatly appreciated.

Regards,
Linda
Title: Re: Pityriasis Lichenoides Chronica
Post by: Einahpets on Wednesday October 05, 2005, 05:05:15 PM
I was diagnosed with PLC about 3 months ago and my skin nearly cleared up completely throught out a hot and humid Michigan summer but its becoming colder and drier outside so my skin is acting up again.  I guess I will have to begin the light box treatments if I want to stay anywhere near normal this winter. Anyway I have done a lot of reading and was wondering if anyone else had read about the indications of PLC & PLEVA.  I read that this disorder is commonly seen as an early sign of HIV and some other immune diseases.  I was just wondering if anyone else has ever read that or heard anything about this information from their dermatologist.
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Wednesday October 05, 2005, 05:31:53 PM
I've not heard that PLC was a precondition for HIV, but I have had Multiple Sclerosis for years and just developed the PLC this year. So go figure....

I found that Eucerin cream (original lotion) helped with the PLC control, but this week I tried some oil that my husband uses for his phemphigus. It's from "Sophia's Solution's" and it's a lavendar oil that not only moistens the skin, but the lavender has been used for centuries for multiple skin disorders.

Hope this helps.
Elseaeff
Title: Re: Pityriasis Lichenoides Chronica
Post by: Einahpets on Wednesday October 05, 2005, 07:19:07 PM
Have you seen any changes with the lavender oil?
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Wednesday October 05, 2005, 10:44:39 PM
Dear Einahpets;

I am sorry for not finishing my posting. The company I mentioned, "Sophia's Solutions" (www.sophiassolutions.com) specializes in those with special skin needs. My husband's pemphigus causes a type of cradle cap on his head and his lavender is a 1% blend. The PLC gets so severe with me at times that I am using a 2% blend. It doesn't burn and smells great. While putting it on, I lay on a beach towel on the bed and just keep rubbing it in until my skin is just soft, not oily. The soap I use is also from Sophia's and is pure enough to eat. Not that I'd want to do so. It also has no burning sensations or itches from it's use.

I am very pleased with Sophia's Solutions Lavender Oil for treating my PLC and my husband has used them for years without exception.

Come to think of it, my skin is as soft as a baby's bottom and I get to tan also. Can't beat that!

Regards,
Elseaeff
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Monday October 17, 2005, 03:10:26 PM
Hi Everyone,

Just wanted to see how everyone (particularly the children) is doing.  My daughter still has the same old PLC...  question?  Alot of her spots are pretty small; but they always seem larger on the back of her upper legs/thighs and bottom.  This has always been the case.  Her spots are typically less than 5 mm in diameter, but every now and then, they get a little larger and look a little flakier (with that skin that she is wanting to peel off...it is so hard when they are young).  Does anyone get ones that are larger sometimes?  I get a little nervous, because of the whole MF/lymphoma thing; but so far, over the years, the larger ones always went away (although it took longer). 

Also, Angela, regarding children with PLC/PLEVA, I don't know if I every told you...  my old doc in Boston had had quite a few patients with this, and referred to the pattern of "less severity" over the years; he also said that he had a young teenager (can't remember the age, perhaps around 13 or 14) who had it all over body through childhood (the PLC version) and as a young teenager, it only remained on his hands.  When I get discouraged, I try to remember things like this.  I like my current pediatric dermatologist (I only see her once a year); however, she is younger, and hasn't much experience; she has only seen one case of PLC/PLEVA, and it is in a 9 year old boy who has had it for a few years.  His parents have taken the route of "extreme dark tan" (this is Florida, after all); and he is basically in perpetual hypopigmentation.  I just don't want my daughter to have an extreme tan.  I don't mind a bit of sun and perhaps a very light tan; however, any more, and I get nervous about the whole skin cancer thing. 
Angela, is there anything more that your docs have said regarding kids, etc...?

Take care,

Jahan
Title: Re: Pityriasis Lichenoides Chronica
Post by: Angela7 on Tuesday October 18, 2005, 01:40:08 AM
HI Jahan - always great to see an update from you and your daughter.  Hopefully you, like us all,  are getting used to life with spots - my goal has and continues to be to try and make this not as big a deal as possible.  So far it seems to be working and my son's biggest question is where are his little brother's spots.  My ped. derm also subscribes to the "burn itself out over time" theory for kids that get Pleva/PLC when they are little.  I have no idea if his is getting less severe (he is 6 1/2 and has had it for 4 years now) but we are in a very clear patch with almost no new spots right now.  He is pretty covered with hypopigmentation though since his summer tan is fading and that is when it is usually most obvious.  My husband just reminded me that he tends to get very bad around Thanksgiving and be covered the rest of winter so we'll see if this yera follows suit.  The healthier he stays, the less spots he gets.

His spots can come in all shapes and sizes and he has gotten a few large quarter shaped flat spots (that looked almost like a bruise) over the years - those made me very nervous b/c they were different than the usual small red spots that end up scabby which he usually gets, but the ped. derm was not concerned.  It is always good to do a CBC (complete blood count) annually to ease any fears or worries - I know it helps me stay calm.  But yes when they are flaky and dry he tends to pick them so they in turn scab and scar - no fun.  I also only go to the Dr annually and am not due until mid-winter.  I am interested in the Lavendar oil that someone posted on this string - has anyone checked it out?  Any out there one using Acyclovir?

Take care, Angela     
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Tuesday October 18, 2005, 02:02:07 AM
Dear Angela,

I am the one who posted the info on lavender, I'm embarrassed to have re-read the posting and sounding like such a commercial. I hear a lot of concern from parents of children suffering with this frustrating condition and yet here I am at 49 years old and just as frustrated, embarrassed and confused as to why I have it and not my brother or sister.

Back to the oil. My husband suffers from a fairly rare disease called pemphigus, quick laymen's terms -- the disease disintegrates the layer of 'glue' holding the 2nd and 3rd layers of skin together -- leaving him with raw and tender new-growing skin. We did a lot of searching when trying to find a product that is healthy, responds to his skin's needs and passes muster with his dermatologist at VCU's MCV Hospital. The oil we found from Sophia's Solutions was not only what he needed, but with recommendations from his derm., Sophia's was able to add a few addition oils to help more.

With my PLC, I use a 2% lavender oil mixed with jojoba, sunflower, sesame, grape seed, vitamin E and wheat germ oils. I always put it on right after my shower while my skin is still wet, trapping moisture below. This oil solution is light, doesn't clog the pores -- which is something that drives my skin crazy when I'm broken out from head to toe. The other cream which I've found doesn't irritate my condition is Eucerin original. Nearly every other cream I've tried is too heavy and my skin can't breath causing the itching to be even worse.

Back to PLC, can anyone tell me if their children have ever experienced a fever and/or other symptoms or side effects when a new break-out occurs? My doctor says she doesn't think it's the PLC, but I thought I had read somewhere about this. Also, am I nuts or has anyone seen anything that looks like 'feathers?' Again, the doc says it's just the flaking skin, but these have a much different texture than the skin.

I feel so bad for all of your kids who suffer with this. I can't understand it at my age, how can they? It's heartwarming to see all the concerned parents out there. You're good people.

Thanks!

Elseaeff
Title: Re: Pityriasis Lichenoides Chronica
Post by: EX-itchell on Thursday October 20, 2005, 12:14:42 PM
Hi, I'm a 47 year old woman just diagnosed with PLC.  Please can someone tell me how they  control the incredible urge to itch, especially at night?  I'm using euricin, and something called Double base, that worked for about a week, and doesn't much now.
My steroid cream (which I'm not too keen on) never did work, so I've given up on it.  Do anti hystamine tablets work at all?
Do other people have experience of the rash breaking out all over the body with huge temperature, then going down over a few days, then returning in small crops of spots, (inner thighs, spreading to trunk and underarms) over the next month?  Is there any sign to show you have got it under control?
Any help would be appreciated.
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Thursday October 20, 2005, 09:32:01 PM
Welcome to my club! At 49 I thought I was the only one here over the age of 10 with PLC... It is frustrating and confusing -- not only to me, but to my dermatologist!

I have found that the lighter you keep your treatment (oil, cream, ointment, etc.), the better it feels because your skin can't breath with anything heavy on it. At first, the only thing I could use was WHIPPED Cocoa butter cream, but when I contracted a staff infection, I discontinued using anything out of a large jar for fear of recontamination.

Original Eucerin and the lavender oil I've mentioned before are the only other things I will or can use on my skin. It's important to continue to apply the cream, never allowing your skin to dry out or the itch does get worse.

Finally, in lieu of her expensive narrow b-band UVB light, my doctor has me using a tanning booth 5 times a week, at least 5 minutes a day. You've got to work up to the time, burning is awful when you've got plc.

I know a lot of the folks here are not too keen on the tanning route, but it works for me and for the little opportunity for vanity I have, I don't look white as a ghost anymore!

Prednisolone seemed to help, but the PLC came back harder when I weaned off the steroid. I have Multiple Sclerosis and must take periodic IV infusions of a powerful steroid called Solu-Medrol. This completely cleared the PLC, but about 5 days after the infusion, I would find myself covered worse than ever.

Watch the infection, keep it clean. Try various creams but don't clog the pores, various oils (lavender, vitamin E, Flax or grape seed) seem to help -- I use them after the cream has soaked into my skin. Sunlight is the final factor for me.

Hope this helps and good luck!

Elseaeff
Title: Re: Pityriasis Lichenoides Chronica
Post by: EX-itchell on Friday October 21, 2005, 07:03:35 AM
hi Elseaeff,
It is good to know other people know the ghastly feeling! Yesterday I did some research and came up with another idea for cream - Aloe Propolis cream, which is beside me know, and gets a great press.  I'll let you know.
You mentioned fever in a previous post.  In the summer I had some small cold, with some odd symptoms.  I did a long haul flight during which I sweated like mad.  After a night's sleep in the hotel I woke up covered in small spots - not itchy - with a very high temperature.  I drank gallons of water and reduced the temperature, and over the next 24 hours the spots disappeared with no side effects.  3 weeks later the soles of my feet started to peel, which they did for a week or two, then small numbers of spots arrived - between my legs, then slowly spread over my trunk, concentrating on inner arms, round waist, down sides.  I am also never cold now, but I don't have a temperature.  Does any of this sound familiar?
I'll try your lavender solution too.  I find my skin gets easily used to creams, and I mustn't stay with the same one.  Do you have the same problem?
Bye for now,
Itchell
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Saturday October 29, 2005, 03:16:35 PM
Hi Everyone,

Someone mentioned on the post about the itchiness.  From what I can tell, any itchiness associated with my daughter's PLC seems to be related to her dry skin.  Ever since she has had the PLC, her skin became very sensitive and generally dry all over.  I cannot put any regular or even fragrance free moisturizers on her, since they sting her skin (especially legs and arms).  Even where there is no rash, she gets "stingy" and irritated.  My derm said that some people are sensitive to the preservatives in the moisturizers; the only  moisturizer that doesn't have preservatives (they said), is regular plain petroleum jelly (vaseline).  A couple of times a week I smooth on a thinish layer of petroleum jelly on her arms, legs, back, belly, etc.. the dryness is more pronounced on her arms and legs.  That definitely helps with the itch factor, and keeps it calm.  It also helps make her skin look better.  However, I cannot put anything on her face.  She has had a couple of bouts of dermatitis , and any face creams cause her to get irritated/break out.  They told me that if ever I put anything on, make it a superthin lotion.  She always gets dryness on her ear lobes and below her eyebrows.  I only put a tiny bit of lubriderm lotion on at night.  She tends to get a little irritated around her mouth/chin area, and I initially put heavy cream on it, but it caused a full blown dermatitis.  I learned my lesson with that, and occassionally put a tiny bit of metronidazole around her lower cheek/mouth/chin area.  They told me that she has a little dermatitis and that it is not a big deal.  With kids over the age of 8, they generally prescribe a treatment of antibiotics (they are antibacterial and antiinflammatory); but since she is young, they only gave me the topical antibiotic.  I stopped the heavy creams on her face, and the metronidazole improved it substantially, but it has a tendancy to get irritated, also depending on what type of food she eats (no cinnamon whatsoever).  Tomato products and certain fruits aggravate it as does chlorine water.  We still eat tomato sauce/pasta, as it does calm down the next day.  I am frustrated with how sensitive her skin is, but hope that it will all just calm down after this PLC hopefully burns itself out around puberty (so they say). 

Do any of you have generally irritated skin around face, or an intolerance to creams?  I know someone mentioned that they only use cocoa butter, and can't stay on one cream too long.  What happens if you do, and what is your reaction to other creams? 
Do any of you have just a general sort of "dermatitis"? 

Take care,

Jahan 
Title: Re: Pityriasis Lichenoides Chronica
Post by: EX-itchell on Saturday October 29, 2005, 05:56:04 PM
Hi Jahan,
I've been diagnosed with plc, but since I'm in my forties, am wondering if it's correct.  For me I use a mix of creams as my skin gets used to any one then it stops working.  Sometimes Aloe Propolis (available mail order from Living Forever) sometimes Vaseline Dermacare which is very gentle and also Eucerin.  The Propolis part is a natural bee antibiotic and might well sting too much for the face, but is useful to help less sensitive parts.  The Eucerin I use on my daughter and is the only thing she is happy to put on her face.  Make sure to get the right type.  There is a special 5% urea content for faces, and a 3% for children (other than face).  There's also a shampoo if needed.  Try this address and they offer free samples. http://www.eucerin.co.uk.  It is also available from Boots.  My daughter only suffered from eczema but had this from 3 months. She is now 11 and finally clear of it - usually!  Don't take yours to a REALLY hot dry climate as we did.  The skin gets much worse.  We stayed in a hotel room at Ayres Rock for 3 days with a desperate little girl.

Since my itchiness gets worse when I get hot. I use ice packs (or frozen peas) wrapped in a flannel against my skin to cool the itchy area and that helps me.  I hope it might work a little for your daughter.
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Saturday October 29, 2005, 06:38:13 PM
Dear PLC People,

I was so glad to read about the Cinnamon, Jahan! I have been itching all over and have had about a dozen spots break out and I couldn't figure why it was happening again. I had finally cleared up (but still very dry and using light treatments). I've been having Cinnamon on my Cinnamon/brown sugar bagels every morning! I will cease the Cinnamon and see if that helps with the itch.

As it seems with everyone, I have to use different types of creams/lotions/oils depending on the 'stage' of my current break-out. The 5 times I've 'cycled' through the PLC this year, it came on very hard, strong and badly. I had to take several showers a day, use only water-based lotions such as Eucerin, the very light lavender oil, and antibiotic cream. My arms and legs became so raw that I got staff infections several times. At the beginning of my breakouts I guess I scratch in my sleep, leaving open sores to become infected. At this time my dermatologist also has me on Zithromax for the staff infection.

Hot showers feel great but make me suffer terribly afterwards! I've learned to take luke-warm showers when I've got any lesions.

When I shower I don't dry myself, I put the cream/lotion/oil on my skin while it's wet to try and lock some moisture in and don't dress until the cream/lotion/oil has soaked into my skin and I've put a second coat on. The first week is pure misery. It itches, burns, hurts and to top it off, I've got to take a shot of interferon every other day for the MS that makes my muscles hurt and gives me a terrible headache.

Each phase after the first gets easier to handle. I have learned I can never use any thick lotion while I'm broken out with the pustules because it causes them to swell and my skin can't 'breathe.' Lucerine cream is wonderful to keep my skin moist, but I can't use it if I have any lesions.

I've found a simple $10 gadget that has a head with roller balls which you fill with your lotion/cream/oil and has a long handle. It allows you to take care of your back and other areas you can't reach! I can remember seeing them in catalogs and laughing, but I now own several of them, I want to be sure I have one at all times if one breaks (they're made of plastic).

My dermatologist had me traveling 55 miles round trip to stand in her Narrow Band UVB Ray box for 10 seconds, paying $20 every day. Instead I joined the tanning club and stand in a tanning booth everyday, I'm up to 5 minutes now. It helps just as much as her expensive treatments.

Finally, I think my problems began with immense doses of IV infused steroids (for the MS) and oral prednisone. I took myself off the oral and refused the last 2 infusions and I'm (nearly) lesion free. Perhaps my body was so overwhelmed with man-made steroids that it forgot how to make it's own. Who knows?

May everyone stay itch/pain free this weekend!

Regards,
elseaeff
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Thursday November 03, 2005, 01:10:30 PM
Dear Elseaeff,

I think you misunderstood me about the cinnamon related to plc.  My daughter has supersensitive skin, and when she eats anything with cinnamon or tomatoes, chlorine, etc..., it causes the skin around her mouth area to become red and irritated.  The next day, it usually calms down; it has nothing to do with the plc spots...just general skin sensitivity/irritation exacerbated with certain types of food around the mouth area.  Hope that clears it up.

Jahan 
Title: Re: Pityriasis Lichenoides Chronica
Post by: Einahpets on Friday November 11, 2005, 05:34:27 PM
Welcome to all new members and visitors and hello to all.
I have just been going through the site for some answers or encouragement. I have become just a bit depressed about my condition with winter approaching and PLC is getting worse.  I have been set up to begin light treatments.  It was suggested to me before when they thought I simply had eczema but reading you alls comments has given me the impression that the light treatment doesnt work.  Has anyone consistently gone through the light treatment and had no success or is it just too much trouble and most people get frustrated and stop. I cleared up alomost completely this summer from the natural sun.  Is it worth spending the money on the light treatments because steroids dont work AT ALL.
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Friday November 11, 2005, 08:10:22 PM
Dear Einaphets,

My doctor was charging an exorbitant rate for her light treatments and her nurse told me to join the tanning center in my town -- a month's worth of light costs less than 1/4 of ONE of her light treatments.

Now I have a tan and NO pustules! If only I could find a disease that required I have my nails done regularly!

Elseaeff
Title: Re: Pityriasis Lichenoides Chronica
Post by: simmy on Sunday November 13, 2005, 08:33:27 PM
Hi this is my first time to the forum I have had plc for about 18 mths now but only had it diagnosed via biopsy in April by a private doctor as the NHS didnt what to do or what it was. I am so fed up of having these ugly marks on my body I am 27 yrs of age but feel I cannot wear what i want to wear due to the horrible spots. I just came back from a holiday in the Carribean 4 wks ago and found that the sun kept them at bay and faded the scars that i had but I am now suffering another outbreak however I am fortunate that I dont suffer from itchiness or fevers so I do have that to be thankful for. If anyone has any suggestions of what I could use, at the moment I am using Palmers Cocoa Butter, would be great
Title: Re: Pityriasis Lichenoides Chronica
Post by: EX-itchell on Monday November 14, 2005, 05:23:33 PM
Hi Simmy,
You've joined a very small, select group of us adult plc sufferers.  Welcome!
Elseaeff and I put as little as possible on our skin: we both like Eucerin (available from Boots) and I really like Vaseline Intensive Care "Dermacare", which your chemist can order for you and is really cheap.
I was advised by my derm to use Double Base which I hate because it stops my skin breathing.  I also use warmed almond oil sometimes - maybe twice a week, after a warm, not hot, shower.  I wear pure cotton, as it's the only fabric my skin doesn't find irritates and which is breathable.  Synthetic materials don't allow the skin to breathe and it gets itchier!
I hope that helps a little.  Let us know!!  I haven't yet tried the light treatment, although I'm hoping to get some sun over Christmas to make the spots fade more. 
All the spots have come up and gone, except those in my armpits, down the sides of my trunk, on my stomach and chest.  Where are yours?
One day maybe we'll be spot free again!  Here's hoping.
Itchell
Title: Re: Pityriasis Lichenoides Chronica
Post by: simmy on Monday November 21, 2005, 08:51:02 PM
Hi Itchell,
I saw eucerin in boots I will invest in some to see how it goes, I have my spots on my stomach, my neck,my arms and on my shoulder blades. Fortunately for me I dont find that they itch me or that my skin is irritated in any way. I have started using a vitamin e soap which contains aloe vera as i have been using normal shower gel, but after joining the forum have found maybe thats not for the best. I did find that using fresh aloe vera from the plant itself helped I used to put it on the effected areas before going to bed however it can be messy and does stain your clothes. I find there is not enough research into this I had to go private to get a diagnosis the nhs did not have a clue and since giving the results to my doctor he does not know how to treat it, I know there are a lot of people worse off then ourselves but you cant help wondering when is actually going to go away if ever, I will let you know how I get on with the eucerin. Actually something I forgot to mention that when i went to carribean i purchased some pure almond oil and found that it was great and soothing also i have started taking vit e tablets as this is meant to be good for you skin, holland and barrett do pure vit e oil which I am yet to try but I will keep you posted

take care
simmy   :)  ;D
Title: Re: Pityriasis Lichenoides Chronica
Post by: khur on Thursday December 08, 2005, 06:24:38 PM
Hi, Im new to this forum and recently diagnosed with PLC. I've had this condition for over four years now and it has been increasing steadily. However, I do have a few tips to share with you guys. But first does anyone here itch after their body gets warmed up a bit? For me if I run up a flight of stairs or about 4-5 minutes into my workout I start to itch like crazy.. if I continue working out the itchiness subsides and goes away in about 2-3 minutes .. thats really weird

anyways I would advise you not to use Eucerin because I have found it 'suffocates' the skin.. it has actually made me feel worse .. one lotion that has worked for me is Aveeno Menthol.. make sure you get the Menthol kind because it actually cools your skin.. itwont cure anything but it makes the redness go down a bit .. I usually use it after I shower and before going to bed .. this sort of keeps the plc at bay and prevents it from getting redder.. i have used many other creams including eucerin, vaseline, st. ives etc. etc. but Aveeno menthol has worked best for me..

I have also found cool showers to help.. never take hot showers becuase although they feel great they will only inflame the rash ..

i am currently trying out this herbal medicine and .. touch wood.. it seems to be making things better but I will only post it here if it can maintain its effect for a few weeks or so because the rash has cleeared up a bit before only to come back ..

anyways.. wishing everyone a speedy recovery !
Title: Re: Pityriasis Lichenoides Chronica and accupuncture
Post by: EX-itchell on Friday December 09, 2005, 05:12:05 PM
hi fellow plc sufferers
I've become very disillusioned that I still have new eruptions of spot-crops and decided to try accupuncture.  It worked for me very well when I had sinusitis between 2003 - end of 2004, taking away all the pain associated with it, so I'm seeing if it can sort out my problem here.  I had my first session today and the doc told me that the Chinese see skin inflammations as a sort of "too hot blood disease," so his aim is to cool my blood.  I haven't felt particularly itchy this afternoon, but it is way too early to know if it will be a success.  But if anything were a success with this disease we would all like to know it, wouldn't we!
I've also just called BUPA who will allow me £250 of complementary medicine each year so I can get some free treatment.  If some of you are insured I thought it might be of interest to know this is a recognised treatment to try for psoriasis type diseases.
I'll keep you posted.
Itchell
Title: Re: Pityriasis Lichenoides Chronica
Post by: Janus on Friday December 30, 2005, 08:31:17 PM
I have reported over my conditions many months ago, at the begining of this thread. Well, my plc is gone !!!!!!!!!!  How did it happen?  The sun did it !!  All the red spots are completely gone from every part in my body. I still have a very mild itching now and then, but no spots. My advise is, hold the antibiotics and get under the sun as soon as you can.
Cheers
Janus
Title: Re: Pityriasis Lichenoides Chronica
Post by: khur on Friday January 06, 2006, 08:44:06 PM
Janus,

First of all congratulations! Secondly... how much time did you spend under the sun? and for how many days before you saw any results?

please let us know. thanks,

khur
Title: Re: Pityriasis Lichenoides Chronica
Post by: Janus on Saturday January 07, 2006, 04:29:27 PM
I live in texas, where the sun is strong. I spent about two hours by the swimming pool three times a week on average. However, the sun is quite strong here, so I usually rested in the shade, nevertheless, my body was exposed to the sun when swimming, walking, etc. I cannot tell you exactly how long did it take for the red dots to vanish, but at the end of the summer they were gone. I must say that I do have a very mild itching now and then on my arms, but no red dots.
Cheers!
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Saturday January 07, 2006, 08:12:25 PM
Dear Friends,

I have also been asked many times about how long it took for my skin to clear, the 'rash' to be gone. I am not sure. My rash cycled so many times this year that I'm not sure if the final cycle ended when I refused to take any more IV-infused steroids for my MS or when I began the tanning. I believe a combination of both -- refusing the steroids stopped the cycles and the tanning finishied the 'rash' to where I had none within 6-8 weeks. To do this I tan in a regular tanning booth (standing), 5 minutes a session, 5 days a week.

I have slacked off the tanning during the holidays and now have a ring of 'rash' around my torso. I'm not sure if it's from less tanning or a new cream I've been using. Topical steroids aren't working, so I'll try the tanning without the cream. (I'll put Vitamin E cream on after the session to prevent total dry-out).

:cf: Cross your fingers -- may we all be blessed with a spot-free tomorrow!

Elseaeff
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Tuesday January 10, 2006, 02:25:45 PM
Hi Janus,

Congrats!  Is it really totally gone?  How extensive was it at its worst before you started sunning yourself?  Please keep us posted, etc...  Didn't you have PLC a few years ago, and it went away?  How long were you PLC free before you had the lastest outbreak? 

Take care,

Jahan
Title: Re: Pityriasis Lichenoides Chronica
Post by: Janus on Tuesday January 10, 2006, 09:36:19 PM
JAHAN,

I had PLC many years ago only on my upper torso, and it disappeared for no aparent reason. A couple of years later it appeared again (the last time), this time on my upper torso, arms and some on my legs. The sun ersased the red dots. I feel there are still some hard spots inside my skin, probably where the red dots were, and some of them itch, very mildly, sometimes.
Cheers!
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Thursday January 19, 2006, 03:50:50 AM
Hey all,

I'm 17. I got PLC last year around January (Summer). I had it everywhere except the face. It took along time to go away, I reckon it would have been November when it was mostly gone. But I still have some dark spots..

Okay it's now around the same time as last year when I got it, and I remember last year I started getting flea-like bites, all over my stomach.. Now I'm starting to get a few again, I'm really paranoid and I think I'm gunna get PLC for another year.  :(

The doctor told me to have cold showers, and I would go in for UVB treatment 3 times a week. Then he stopped and put me on these half orange, half white pills. And I was sick of the cold showers, so I just had one hot shower. But that turned into always having hot showers. It didn't seem to get worse with the hot showers. So I kept having hot showers.

Anyway, my question is.
Has anyone had PLC, think it's all gone. Then suddenly it comes back.. And do you get it around the same time each year?? I wish they would find a cure for it.. Seems to have something to do with the immune system and T-Cells. Maybe I should get a full blood count..

Sincerely,
PLC4ME
Title: Re: Pityriasis Lichenoides Chronica
Post by: Angela7 on Saturday January 21, 2006, 12:11:27 PM
HI there - my 6 year old son has had Pleva for 4 years now, it goes away and comes back many times a year.  You mentioned that this is summertime where you live - the natural sun is great for clearing up most Pleva sufferers.  At the first sign of spots, you can start by getting at loeast 15 minutes of sun before applying sunscreen (depedning on how fair or dark you are).  After initial sun sexposure the first few days, the spots sometimes look worse for my son but in a few days start to dry up nicely.  The more sun for him the better for his spots.

Our pediatric derm. has my son do a complete blood count (CBC) every year to be safe and check on him.  His Pleva definately seems immune system related - he gets sick and gets spots.  That has been his trend for years.  But the good news is that this winter whereas he has been sick and would usually be covered this time of year he has very few spots.  Drs say that young people (I would think that 17 counts) usually burn out over time.  There are lots of other inspirational tales on this site too so read the past posts.  So far, the consensus seems to be that the sun helps most of all.  Some people a while back were trying the anti-viral drug Acyclovir with success.  So hit the beach and stay positive!  Good luck!     
Title: Re: Pityriasis Lichenoides Chronica
Post by: princesslaura on Saturday January 21, 2006, 11:09:41 PM
Heya

I have pityriasis Lichenoides Chronica n i'm 14 n i've had it for about 2 years now, my consultant says it should go away within 3 year. I have it all over my body n it gets rele bad on my lower arms especially when i get too hot or too cold or use a different soap or some fragrances. I also get it on my eye lids so they become rele red and inflamed so it looks as if i've been cryin. I was firstly told i had scabies,  then i was told that i had guattae psoriasis and sent to the skin clinic at the hospital where they told me i had pityriasis lichenoides chronica. They also said it could go and come back. I have been given steroid cream for my eye lids and E45 to moisturise the skin because it gets very dry. I also found that i can't do swimming because the chlorine in the water effects my skin and makes it go rele rele bad.

Does any1 else also have the problem of when they put there hands in water or feet for about 3 minutes they go all puffy n waterloged as if they've been in the water for an hour? because i do n i don't know if its linked to it?

Please reply because i dunt no any1 else with it

Luv Laura xxx
Title: Re: Pityriasis Lichenoides Chronica
Post by: princesslaura on Saturday January 21, 2006, 11:18:00 PM
o yer i meant to say before that i had the ultra violet light treatment about a year ago and it didnt rele do any thing i just made it worse and itchier. It was like a sunbed and i gave me sunburn bcoz i had to be in there for a while :(.

laura xxx
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Saturday January 21, 2006, 11:44:31 PM
Hey Laura,

The chlorine doesn't really hurt my eyes. I can open my eyes without it hurting. But I go to the beach alot and the salt sometimes really stings. But I will go in one day and it's fine, I can open my eyes and everything. Then another day it really stings.

I just remembered, last year I had a bit of acne on my face, so I used tea-tree oil to try and clear it up (I used like a whole handfull of oil). Not long after that I got the PLC.
Well I forgot about that, and used the oil again a week ago (but way less than before), and I saw a few spots coming back.. Maybe theres a link..

Also my spots first started on my stomach, thought they were flea bites, how about you?

I am from Australia so it is summer here at the moment.

Sincerely,
PLC4ME
Title: Re: Pityriasis Lichenoides Chronica
Post by: princesslaura on Sunday January 22, 2006, 09:56:18 AM
Heya!

I'm from England and its winter at the moment so its not really that sunny, but in the summer when the sun comes out my PLC goes down abit. I can go in the sea and that kind of helps it although it really cold but after i've come out it just comes back again. My PLc seems to change if its cold it gets really bad or if i'm really hot it get worse too. Mine also started on my stomach and the doctor told me that it was scabies but then i had an appointment at the hospital and they said it was PLC.

They think it started from a strep throat infection and i was allergic to the bacteria in the throat infection and i got PLC or to a sudden dramatic drop in temperature because i went to Austria on a skiing holiday and we went swimming in the outdoor pool. When i returned back to the UK i had a rash on my stomach and that eventually covered my body.

Do you get the hand thing?

laura xxx
Title: Re: Pityriasis Lichenoides Chronica
Post by: EX-itchell on Sunday January 22, 2006, 10:23:48 AM
Hi Laura and wellcome,
I've been posting for a few months, live in England and have plc.  What is the hand thing??
Ithcell
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Sunday January 22, 2006, 10:27:02 AM
Hey Laura,

What do you mean by that hand thing? My hands and feet were the last to clear up.. Do you have hot or cold showers? I prefer hot, doesn't really do much damage. Actually I think it helps it.. Did you ever go on any pills? Were they effective?

Sincerely,
PLC4ME
Title: Re: Pityriasis Lichenoides Chronica
Post by: princesslaura on Sunday January 22, 2006, 10:27:38 AM
Heya
The hand thing! lol its when i put my hands or my feet in to water for about 3 minutes and they go all puffy and water logged as if they've been in water for an hour n then i can run my finger down them and the skin will come off. This only happens on the palms of my hands and the soles of my feet. My consultant says she has no idea what it is and whether it is linked to my PLC, so i'm abit of a mystery lol.

laura xxx
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Sunday January 22, 2006, 10:29:00 AM
Wow does it make the PLC worse? Have you had it your whole life?
Title: Re: Pityriasis Lichenoides Chronica
Post by: princesslaura on Sunday January 22, 2006, 10:32:23 AM
Heya PLC4ME

I have warm showers but have had cold showers before and that made it really come out on my arms and legs, but if i have baths it will all come out really red and noticable then about half an hour after i get out of the bath it goes down and goes bac to normal. I was given anti histameina (don't know how you spell it) and they made me go to sleep but stoppd the itching. I've been given lots of gream but i find the only one that helps is the steroid cream and an aloe vera one my uncle got me it helps to moisturise the skinDoes yours ever bleed? mine will bleed and on my legs when i move it splits open and bleeds, and if my clothes rub the spots they start to bleed.

laura xxx
Title: Re: Pityriasis Lichenoides Chronica
Post by: princesslaura on Sunday January 22, 2006, 10:34:06 AM
yeah it makes my PLC redder and more obvious. I only got PLC two years ago after a trip to austria, iwas told i'd have it for three years so only a year to go hopefully but have been told it could come back.

luv laura
Title: Re: Pityriasis Lichenoides Chronica
Post by: EX-itchell on Sunday January 22, 2006, 10:36:39 AM
hi you two,
Weird to get 3 people with plc on at a time!
Yes mine gets redder after a bath or hot shower.  I recommend warm shower not too strong, and use organic sesame oil to moisturise your skin every night.  Mine does well if I take time to massage the oil into the skin, though starts off being a bit redder.
Sun does NOT work for me.
Itchell
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Sunday January 22, 2006, 10:37:51 AM
Hey Laura,

Well I hope it goes sooner or later. Mine never did bleed.. Unless I picked it :P, they looked exactly like chicken pox. It's what all the doctors thought I had aswell. But you can only have it once so it had to be something else... Does yours looks like flea bites, then a frosted glass like layer cover it?

Sincerely,
PLC4ME
Title: Re: Pityriasis Lichenoides Chronica
Post by: princesslaura on Sunday January 22, 2006, 10:40:20 AM
Heya

lol there are people like me at last! i don't know anyone else with PLC. I might try that oil bcause at the moment i'm only using E45 and it doesn't really do much just moistureises the skin. Sun doesn't really work to well for me either, not that we see that much in England, what  part of england are you from? I'm seeing my skin consultant next monday so hopefully she'll have some new treatment or cream for me .

luv laura
Title: Re: Pityriasis Lichenoides Chronica
Post by: princesslaura on Sunday January 22, 2006, 10:42:52 AM
heya

yeah mine does look like flea bites with a scale on top apart from on my arms where it looks like flea bites but as if there under layers of skin. Does yours look like that? Do you get any funny looks for having it?

laura
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Sunday January 22, 2006, 10:43:38 AM
hi you two,
Weird to get 3 people with plc on at a time!
Yes mine gets redder after a bath or hot shower.  I recommend warm shower not too strong, and use organic sesame oil to moisturise your skin every night.  Mine does well if I take time to massage the oil into the skin, though starts off being a bit redder.
Sun does NOT work for me.
Itchell

Hello Itchell,

Where do you get your organic sesame oil? Just at the health food store? When you have showers did you use normal soap? I had to use this sorbolene soap, put it all over my body before I got in the shower, then lightly rinse it off... And dab myself dry lol..

Sincerely,
PLC4ME
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Sunday January 22, 2006, 10:46:33 AM
heya

yeah mine does look like flea bites with a scale on top apart from on my arms where it looks like flea bites but as if there under layers of skin. Does yours look like that? Do you get any funny looks for having it?

laura

Hey,

Yeah I got alot of people wondering why I am always wearing a jumper in the middle of a hot summers day lol. Even though I like the cold and can wear a shirt on a cold winters day.. I just usually change the subject lol.. I told my friends and there cool with it. I just don't want it to come back because I have got my last year of school now. And I know if I get it I will procrastinate heaps.

Sincerely,
PLC4ME
Title: Re: Pityriasis Lichenoides Chronica
Post by: princesslaura on Sunday January 22, 2006, 10:51:31 AM
I know what you mean all my friends are kewl with it but you do get peole going errrrrrr whats that on your arms have u got ecsema and i'll go no i've got a skin condition and they still think its escema, and it freaks some people out because they think they'll catch it off me. I tend to wear what i want now but when i first got it i would wear long sleeved tops and jeans all the time. But now i'm comfortable with it because its apart of me and if people are going to treat my differently for it well that there problem rele.

Luv laura xxx
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Sunday January 22, 2006, 10:58:31 AM
Hey Laura,

Nah they don't come up to me and say whats that, but I bet you anything they talk behind my back and say omg have you seen wot his got on his arms and legs. But I got used to it and one great thing I've learnt from having it is not to care what people think  ;D

Oh there were this group of people, we just started talking about random stuff. Then one goes I think I'm getting spots over my skin. And it's so annoying. It's like his putting all the blame on me and that i've "given" this disease to him, when he probably just has mosquito bites. He doesn't have any spots now, but he's still kinda scared of me lol.

Sincerely,
PLC4ME
Title: Re: Pityriasis Lichenoides Chronica
Post by: EX-itchell on Sunday January 22, 2006, 11:01:47 AM
Hi,
I get sesame oil from an organic shop £5.50 for a half litre which lasts well.  I use only glycerine soap.
My plc spots are also like flea bites, now brown rather than irritated red.  My skin now looks normal.
My spots only tolerate some fabrics - mainly pure cotton is best, no wool, or any synthetic unbreathable fabric.
Since I do worse when I'm hot and sweaty, I can't excercise properly.  I try to keep my body cool so go for cotton t shirts.
I'm going through early menopause.  Are you two both in puberty, or through it?  I'm wondering if it's connected to hormone change.
Have either of you got any other allergies?
I'm going to have to collect my son in 10 mins.  If either /both want I can be back in 2 hours and we can chat?
View?????
Itchell
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Sunday January 22, 2006, 11:08:37 AM
Hey itchell,

I'm through puberty, I read somewhere that it will go after puberty.. Well I hope mine stays gone...
I cant be here in 2 hours, I have to go to bed. I have an appointment with the skin doctor in the morning. So I'll talk to you another day.

Bye Itchell and Laura.

Sincerely,
PLC4ME
Title: Re: Pityriasis Lichenoides Chronica
Post by: princesslaura on Sunday January 22, 2006, 11:09:39 AM
Yeah i'm 14 so in puberty, but i got it when i was 12 so when i hit puberty, normally they say it goes after puberty if you got it before but i got it during so i'm not sure about mine.

My bestest friend on the pic(chantelle brown hair) has got ecsema too so when people are horrible bout my skin she'll stand up for me because she knows what it feels like,  i go to an all girls school now so girls are abit nicer about it (no offenece) because when i was at my ,middle school everyone was like errrrr whats that and it really used to annoy me but thats all died down now. It freaks the teachers out at school because in pe i have to go put water on my arms if it gets too bad and the pe tachers are like OMG! whats happened and i just say o its my skin miss lol.

I've git hayfever tht kinda runs in my family! and i'm allergic to wool, PLC4ME are you allergic to anything? how long did you have yours for?

luv laura
Title: Re: Pityriasis Lichenoides Chronica
Post by: EX-itchell on Sunday January 22, 2006, 12:34:48 PM
Hi Laura,
Well I'm back earlier than I thought.  I just looked through your posts.  I've never had "the hand thing", sorry.  Are you still itchy?  I was really bad for about 2 months, but not any more.  I used ice packs over thin cloth, moved fairly quickly over the itchy places and they cooled down, and were more bearable.

My spots are only on the trunk of my body, and hardly on my arms and legs, other than near armpits and groin, so few people see them, unless I'm in excercise clothes, or skimpy clothes, and right now in the UK that's not likely.

Have you been warned about lots of steroid use thinning your skin?  If it's necessary then use it - we all have done, but be careful not to overuse it - ok?
I've been on this BIG diet recently on the basis that this is an immune disorder and I have to boost my system.  So I've been eating only fruit and veg, and juicing lots.  I've also been eating lots of sprouting beans.  I don't know whether it's helped, only that after 4 1/2 months the spots are in smaller and less angry and fewer in number, so I hope so.
Good luck with your derm.
Itchell :D
Title: Re: Pityriasis Lichenoides Chronica
Post by: princesslaura on Sunday January 22, 2006, 01:03:19 PM
Heya

Thnx for the advice with the steroid cream i only ever use it on my eyelids but even when i use it on there its only when it gets really bad n it looks as if i've been crying non stop. So you know the diet thing if you eat certain foods it gets better? i've recently started eating more frui and veg but i'm a really fussy eater so it working quite well but i have to stick to what i like lol.

My skins probably the worst on my lower arms and hands and at school with writing alot the pens rubs in between my fingers n thats when more spots come up. People never really notoce any more bacause at my school we wear jumpers and in the winter i never take it off because i feel the cold n this country can get pretty cold. The itchy nedd is going but with it on my arms being the worse i have been tryin to self disapline my self not to scratch it and its working quite well. Do you use any specific moisturiser or shower gel or any creams?

laura xxx
Title: Re: Pityriasis Lichenoides Chronica
Post by: EX-itchell on Sunday January 22, 2006, 01:32:40 PM
hi Laura,
I only scratch with VERY SHORT NAILS so it doesn't mark, and through clothes, not direct on my skin, because it's become very sensitive along with the plc.  Even someone running their hand down my arm can hurt.  How about you?
Have you found Eucerin yet?  There are different creams in the series available from Boots.  The 10% is for adult skins and the 3% for children.  Ask your derm which to get.
I also really like vaseline intensive care "dermacare" but when I look at their website I can't find it, so I wonder if it's been discontinued in favour of their "advanced healing"  I would  contact the company or ask your mum to.  I like the dermacare because it doesn't sit on top of my skin, but soaks better into it.
Only use glycerine soap without fragrance.
My daughter has eczema and she finds her blazer more comfortable against her skin than her -mainly synthetic jumper.  Do you have one?
Are you allowed to give in homework you do on the computer instead of writing it? My daughter is allowed.
The scratching IS really hard, but it does help if you can stay cooler, in natural fabrics, then fewer spots appear.
anything else I can tell you, just post me.
Itchell xx
Title: Re: Pityriasis Lichenoides Chronica
Post by: princesslaura on Sunday January 22, 2006, 01:43:12 PM
Heya

At my school we wear polo t ***** ( :o Ed Bot! :-X) and black jumpers and both are made out of synthetic fibres so its not 2 good against my skin so in the winter i wear a different t shirt under my jumper and they never know the difference. I do lots of my homework on the computer and at scholl i tend to use pens now that have a grip around where you hold them because they don't hurt as much

I use aloe propolis creme which my uncle gets me from america its really good and nourishes the skin but it doesn't really do much for the PLC. I've started using some ointment the doctor recommended that doesn't really do much though and its very oily and just sits on top of my skin.

laura xxx
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Sunday January 22, 2006, 02:12:03 PM
Greetings newcomers and comrades in the fight of PLC!

So many symptoms sound the same -- pustules like chicken pox, small, flea-like bites, and tissue-like skin when really bad that breaks and bleeds -- but the best for me has been sunshine. Well, the tanning booth (where I stand, not lay in someone else's juices). I had been PLC free until the new year and the holidays when I stopped going to the tanning salon. I've got a few stray bumps on my chest, but the little bumps come in the hundreds and started between my breasts and on my left wrist and forearm.

Two weeks of tanning 5 minutes a day, first week 3 times, this week 4 times has stopped everything in it's tracks. I cannot use the lotions and creams that the salon sells, but I make sure I am well moisturized before I tan and reapply after tanning.

I have found that, aside from a lack of sunshine/tanning booth, the things that make my PLC appear or intensify are heat, cold, stress, fatigue and STEROIDS. I also suffer from Multiple Sclerosis and the strongest treatment for MS is IV-infused steroids for 3-5 days in very large doses. 3-5 days after ending the steroid treatment I break out from head to toe. Never my face, but my scalp gets covered.

When my break-outs are everywhere, hot water feels wonderful, but it does more damage to my skin so I tend to stay with warm showers. Before leaving the shower I apply a layer of lavender oil all over -- that way it traps the moisture in my skin from the shower. I blot dry with a towel and apply a vitamin E lotion (always lotions that are light and water soluble -- not something thick that will clog the pores). During the total break-out times I prefer to mix Original Eucerin Lotion (not the cream) with lavender oil and apply that all over myself several times, waiting 10-15 minutes in between to let it soak into my skin.

The vitamin E cream I use is from The Body Shop (thebodyshop.com) and the lavender is from SophiasSolutions.com. The lavender is mixed in a base of various other oils that are very good for my skin. Sophia's increases the percentage of lavender for me because it is so good for the skin.

I would love to chat with all, but time to go!

Have a blessed and healthy weekend!

Regards,
elseaff
Title: Re: Pityriasis Lichenoides Chronica
Post by: Anuhjean123 on Monday February 20, 2006, 05:01:10 PM
i have plc and it sucks. i am currently undergoing light therapy and i have seen a huge improvement in my skin.  i have about 1 month left of treatment and i have also been told that after my treatement is over, i should continue to tan at a salon.  has anyone else that has plc been diagnosed with foliculitus, scabies, or psoriasis???
Title: Re: Pityriasis Lichenoides Chronica
Post by: princesslaura on Monday February 20, 2006, 05:09:50 PM
heya

the doctor tld me i had scabies to start with, then i went to see a diffewrent doctor and she told me i had guttate psoriasis and then when i went to the hospital they finally decided i had plc. did they tell you you had some thing different?

luv laura xx
Title: Re: Pityriasis Lichenoides Chronica
Post by: Anuhjean123 on Monday February 20, 2006, 10:41:40 PM
oh yea, my doctor did tell me that i had all three things....first folliculitus..then scabies a month later....then psoriasis (sp?) then after a biopsy, they said it was def. plc. GREAT. i wasted almost 6 months on misdiagnosis.
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Tuesday February 21, 2006, 02:52:59 AM
Hey Anugjean123,

How old are you? and how long have you had PLC???

Yeah it sux aye, if it doesn't go away, you should try tetracycline. It worked for me :D But I stil have a few dark spots. And some spots are starting to reapear :O

Sincerely,
PLC4ME
Title: Re: Pityriasis Lichenoides Chronica
Post by: Anuhjean123 on Friday February 24, 2006, 04:23:50 PM
im 18.

i might try your suggestion.
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Friday February 24, 2006, 08:03:05 PM
I agree with both of you -- having PLC is a real bummer, but there's always a bright side to things.... The best cure I've found is to tan at least 5 minutes a day, 5 days a week in a tanning booth (doctor's orders). I'm trying to find what would require me to have my nails done every other week and hair every 4 weeks...

Tetracycline might work for you, but prolonged use will turn your teeth very dark. I'd check into side effects like that before committing to a long-term use. When my PLC was at it's worse -- pustules from head to foot that were so badly broken out I ended up with a staff infection -- there was no medicine that worked for me (other than the antibiotic cream/capsule for the infection). Warm showers, lots of water-soluable creams, very light oils and sunlight are what cleared my skin. I only get little spots here and there now.

elseaeff
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Saturday March 04, 2006, 02:40:32 PM
Has anyone tried tacrolimus (protopic) for the PLC/PLEVA?

Years ago, my daughter tried a small patch with Elidel, but it didn't make a difference.

Sincerely,

Jahanara
Title: Re: Pityriasis Lichenoides Chronica
Post by: Angela7 on Sunday March 05, 2006, 02:53:03 AM
Hi Jahan - hope you are well.  There is a very scary FDA warning about Protopic and cancer out there, especially related to children, so you should pull up the warning and think long and hard before using it!!  Here in the Northeast, Summer is coming in just a few months . . . yippee!   
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Monday March 06, 2006, 05:31:58 PM
Hi Angela,

I heard about the warning.  Pretty scary.  Does your son's PLEVA present on face, or usually not?  My daughter will be 8 this summer.  They want to try her on a month or two of erythromycin (low dose for kids).  I never bothered, because I always thought that "waiting" it out was the only solution.  I am going to give it a try, but honestly, I am not expecting any response, so I won't be let down.  Just out of curiousity, did your son (or anyone else out there with PELVA/PLC) ever try a dose of erythromycin?  My doc said something about a study indicating that it is effective in hastening up the PLEVA/PLC  and reducing it. 

Sincerely,

Jahan
Title: Re: Pityriasis Lichenoides Chronica
Post by: suki on Tuesday March 07, 2006, 10:44:30 PM
Hi all.
I have been on this thread a while back.
But I will just say again as it might give some hope to some of you.
I had PLC when I was about 15 years old, I am now 43.
I had it for about 3 years quite badly, but nener itchy with it, very very unsightly and I was extremely embarassed about it, so covered up my arms and legs.
I did not want to go under any sunlamps suggested as the specialists said it would only be temperary relief. As soon as I stopped it would come back.
they said it would probably just take its course and the clear up.
Well it did. As I have said before, I have one little area on my lower inside arm that always has one or two little spots, but that is all.
When I had it, it was very bad, my arms, legs, and upper torso.
It seems to be so different in some cases here, but I did have the little red spots which had the white shiny scale on to, and after time this white scaly top would just come off leaving a very red spot behind that took an age to clear, the whole area remaining very red.
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Wednesday March 08, 2006, 12:20:55 AM
Hi Suki,

That is very encouraging news, and definitely makes me feel better, since I worry so much about my daughter's PLC...(she is only 7).  I try not to let on to her how worried I get.  I know they all tell us it should burn its course, but it is one thing to hear it and quite another to actually hear from a real person who's PLC has cleared up!  Keep your fingers crossed for us. 

Sincerely,

J
Title: Re: Pityriasis Lichenoides Chronica
Post by: Angela7 on Wednesday March 08, 2006, 03:07:42 AM
Hi Jahan - my son (now 6 1/2) did 2 rounds of Erythro a few years back, the first one when he had his worst winter and was totally covered.  The first time we tried it it worked amazingly well.  The second time, a number of months later did nothing for him and I have not tried it since.  We are now on year 4 with Pleva and are having our best winter yet.  He has had very few spots and I have no idea why or how come.  Perhaps it is starting to burn itself out as they say . . . oh how nice that would be.  The only difference I do know about is that he got the most sun he ever had in his life last summer and was very tan to start the fall and winter.  He does get the occasional spot on his face and they tend to be bad ones (the deep kind that take a long tim eto heal) - he has a scar under one eyebrow from one a few years ago.  I send you my best and Hang in there!!       
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Wednesday March 15, 2006, 11:55:39 PM
Does anyone with the chronic PLC version ever get lesions on their face?  I know the PLEVA version occassionally presents on the face, but I was wondering about the chronic version.

J
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Thursday March 16, 2006, 12:51:59 AM
After more than six months of nearly-free PLC, it has begun its ritual again. From what I've experienced so far, I've just got to live through the cycle and I'll be right as rain again! I don't dare increase my tanning time, I don't want to burn when the pustules on my legs are so prolific and my skin is getting thin and paper-like again. I had to take another round of Zithromax for the staff infection and keep using the ointment version on all of my open sores.

I'm nearly 50, my knees have been destroyed by the IV-infused steroid treatments I get for Multiple Sclerosis, I've torn the lateral meniscus in my right knee and I now flow through the PLC when it feel like making my life miserable.

But, what can you do but keep fighting it all?

Elseaeff
Title: Re: Pityriasis Lichenoides Chronica
Post by: EX-itchell on Thursday March 16, 2006, 11:39:33 AM
Hi Elseaff,

I'm so sorry to hear you're re-cycling the plc.  Is there any reason you know it has started up?

I'm still free of it - or just with nearly faded spots anyway.  Try to be really careful what you eat.  I'm sure that helped me.  And wear pure cotton so it doesn't hurt so much.

I still look in here most days, so I'm happy to buddy you thru it.

 :hugs:
Itchell
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Thursday March 16, 2006, 07:55:00 PM
Hey Elseaeff,

I'm sorry to hear that your PLC has started again. I thought mine would start again, but it's just a few spots coming and going. I tried tetracycline and I think that helped. When your taking it you can't go in the sun or anything or get too much sun exposure, because I think it's a pigment that restores natural skins cells.. Not really sure though, you should ask your doctor about it.

Thanks,
PLC4ME
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Thursday March 16, 2006, 08:06:06 PM
Dear PLC4ME:

You're right about the sensitivity to sun, which makes for quite a catch-22. The sunlight actually helps the PLC but sunlight will cause other problems with tetracycline. Unfortunately, I am allergic to tetracycline and it's various forms.

I've just got to keep on keeping on!

Thanks!
elseaeff :dance:
Title: Re: Pityriasis Lichenoides Chronica
Post by: anne777 on Monday March 20, 2006, 03:23:21 PM
My daughter 15 was diagnosed with PLEVA..confirmed with biopsy. she is on 1000 mg of eurythromiocin sp? for 4 weeks and it has done wonders already..we are in our 3rd week.
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Wednesday March 29, 2006, 12:54:58 AM
Hi everyone,

I am so discouraged with my daughter's PLC.  Even though we live in sunny Florida now, it still flares up alot in the winter...UV index is lower you know.  And because it is warmer here than where we were up north, she is wearing more summery clothes all winter, and it is therefore alot more noticeable.  I just feel discouraged about it.  It is not too that bad on her torso.  Mainly on upper arms (adjacent to arm pits, and on shoulders).  It is also very extensive on her upper legs and trunk.  Not that extensive on belly.  It is so spotty and red.  I am really fed up, and just thinking that it will never end.  I know they told me that it will probably burn out around puberty, but that is so far away...and I worry that they will be wrong.  And I worry about it turning into something dreaded...

She is going to be 8 this summer, and we just had our "6th year anniversary" for this PLC stuff.  My husband is more optimistic.  He says..."is it any worse than last year?  The answer is "no", so I should be encouraged.  It is hard for me to tell though if it is much better.  I don't think so.  Perhaps it is better on her arms, but certainly not on her legs. 

Where is everyone else's distribution for PLC?   Does anyone notice that if they get a bit of sun that the PLC looks redder and "angrier" after for a day or so?  How many spots do you PLC people have on your legs?  My daughter does have them on her lower legs, but it is not as noticeable as her knees and up above.  There are so many spots to count on her upper legs, it is pretty much all over. 

How are the PLEVA people all doing?  It seems to me that the PLEVA group gets less spots, but that they are angrier/necrotic.  And then, the PLC groups get a ton more spots that are not as angry/pussy/necrotic.

Any feedback from anyone is appreciated! 

Title: Re: Pityriasis Lichenoides Chronica
Post by: Angela7 on Wednesday March 29, 2006, 06:50:55 PM
Hi Jahan - I am sorry to hear you feeling so discouraged - believe me I can relate - our 5 year battle with our almost 7 year old son has often left me very down in the dumps and I usually found this time of year the hardest -like you said lower UV index where you are - long winter ending up here.  I just know from my experience that the less I obsess about it the better it is for me and my son (and the rest of the family).  I also have realized over time that it is all that he knows, he has no memory of skin without spots and even asked me once, in a very concerned voice, where are my little brother's spots (like there was something wrong with his brother).  That was a real wake-up call to me that I will try to shield him from thinking that there is anything wrong with him or that I should make him feel bad unknowingly - but easier said than done sometimes when they are covered.  Plus, I can imagine that an 8 year old girl is much more concerned about her appearance than a 7 year old boy, making it harder still.     

As I told you, for reasons unknown to me this has been our best winter yet with very few spots.  This is after years where he was literally covered with hundreds of spots. His spots tend to concentrate themselves to his trunk area, underwear region, inside elbows, backs of hands and the occasional one under an eyebrow or on his jawline - the face spots always being the deepest and worst.  His spots definately get redder and worse after they are first exposed to sun and he suffers from that hypo (hyper?  I always get them confused) pigmentation all over his chest and back, although the tan eventually fills in after a lot of sun.  He just got over a stomach virus and that usually would have led to tons of spots and this time only a handful.   

I remain confused about the Pleva/PLC distinction probably because my doctor claims that there is really no distinction once it returns more than once.  All I know is that he was originally diagnosed as having Pleva 5 years ago but he has had about 20 different outbreaks over the years so clearly he has the chronic form.  His spots tend to be smallish, red and can get the scab or crust at its center.  He occasionally gets very large and deep ones that require ointment to heal.

I can tell you that I never saw any signs of it burning out slowly over time until this past winter - he was covered only a year ago - so perhaps your year is fast approaching.  They say, slow improvemenbt over time is usually the path that the burn out takes so hopefully that will soon be the case.  I guess all we can do is help them deal with the realities of having it and enjoy when it slows or improves.  And vent to each other - that small group of us Pleva/PLC moms!!!  Summer is coming so hang in there and know that there are many people out there sending you their best and hoping that it gets easier in the future.  Take care, Anglea
Title: Re: Pityriasis Lichenoides Chronica
Post by: EX-itchell on Thursday March 30, 2006, 09:25:28 AM
Hi plc fellow sufferers,

I just want to tell you it is possible to have no spots.  I have been really nervous about going live in case I jinxed things but I have had no new spots for two months now.  My scars are fading, and I don't itch at all. 

At its worst in the last quarter of last year I had hundreds of spots - maybe thousands I certainly couldn't have counted them all - mainly on my trunk: under breasts, armpits, belly and small of back, and between my legs.  I had a few on my wrists which I think was because I am on a computer all day and they get hot on a gel wrist pad.  I had virtually no spots elsewhere on my legs, arms or face.  Nighttime was agony, and I slept with a frozen gel pack to keep me cool and stop me itching.  I wore - and still mainly wear - 100% cotton which I find I can sweat through.  I used organic sesame oil which I rubbed all over my body every evening, and mornings too when needed.  I washed as little as I could by a quick shower using pure glycerine as soap.

I didn't use steroids other than minutely, and when they didn't work, I stopped.  I took the view that it was related to my insides and spent several months off red meat and stimulants, and less time off wheat too.  I juiced vegetables and ate sprouting beans.  I did no excercise as getting hot meant getting more spots.

I used ayurvedic medicine which mainly entailed what to eat and not to eat, and had regular invigorating massages to help the disease pass through and out of me.

I went for a holiday over Christmas, purposefully to the sun, and tried lying in it for a few minutes at a time.  I know it is said that sun is helpful, but my concern that even if I got rid of the spots temporarily through sun, they would come back once in the UK, stopped me being commited to this course of action, and as it felt as if the sun was burning me - even with suncream on, I stopped trying that.

I still don't understand what caused the plc - maybe a combination of stress and a history of small allergies - but I am still unable to eat red meat in the evening.  I have discussed this with my GP and am having further blood tests and an ultrasound to check gall bladder in the next few weeks.  I will post any answers in case they are of help.

I would just urge sufferers to try a detox diet for at least two months.  The first sign you are getting anywhere is getting no new spots, but you then have to persist for some months in my view before you can hope to be clear.  I obviously can't say that I won't get it again.  I just pray I wont!!

Good luck to you all, and :cf:

Itchell
Title: Re: Pityriasis Lichenoides Chronica
Post by: meredithj88 on Monday April 03, 2006, 03:10:58 AM
Hi I'm new here, and I can't even say how happy I was to find this site and this specific topic. I'm 17, and I've been suffering from PLC since I was 4 or 5 years old. I've never met anyone with the same problem, and I've always felt really out of place with it, so I'm glad I can finally find out what causes my "skin problem". I've recently read so much about what causes it, but I want to know how people get over the psychological aspect of it? I've never known what it was like to have normal skin, and no treatments have worked for me so far. It's caused me a lot of insecurities, as I can't count the times people have shouted out of no where, "do you have chicken pox!?!?" or something else mortifying like, "whats wrong with your skin?!?!", and only because they could see the spots on my arms.  One time when I was seven, I was pulled out of swimming class and had to get a doctors note saying my skin condition wasn't contagious, because one of the other children's mother demanded to know what was wrong with me and my skin. I'd love to talk to anyone with the same problem I have, because I've never been able to relate to anyone like this before. I'd love to hear from the people who have suffered from this problem and have overcome it, and how their lifestyles work for them, because I'm lost, and very sick of PLC.
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Monday April 03, 2006, 05:19:54 AM
Hey meredith, I am also 17. I had PLC last year for almost a whole year. And I still have some spots that now are dark. When I first got it, it was like a month before we had to go back to school. And I thought it would pass. But the doctor said it would take a long time for it to pass.

 I didn't want to go to school but my mum made me. So I went, with like a jumper and long pants in the middle of summer .. But people still saw my hands, and it looked like I had chicken pox. And people thought it was contagious. But most people didn't even know I had it, because I always put the sleves of my jumper over my hands. It's quite embarrasing at first, but I eventually got over it. And I'm glad I did get it, as I learnt not to care what other people think about me or not get embarrased so easily. I sorta figured out the whole concept of embarrasment. You put yourself in the other persons shoes and think "What would I think if I were them". Then you see that most people judge before they know. Yeh sure they are prolly saying stuff behind our backs like, have you seen Bobs arms? He's got some disease. Well we all face something in our lives sooner or later, ours have just come now. They might get something even worse when their older. I know it's not good to think this way, but usually there is someone who has something just as bad or even worse than you've got. It might not be visable.

 But anywayz PLC as I've read usually only lasts in a particular stage of life. And you and I are going into adult hood and before you know it you will have clear skin. Also you should ask your doctor about tetracycline. It helped me. If you are taking it you have to get less and less sun. Also the cause of PLC is not yet identified. Some say it could be a microorganism. Some say it's genetic. I believe it is both. Some sort of molecule or substance or microorganism influences the gene and PLC is formed. Another thing you could try is going on a different range of diets. I read earlier in this thread that it had worked for someone. For example, try eating less sugar or less milk. Try changing your lifestyle for a few months and see how it goes. Instead of sugar eat honey. Go to the beach often, if you spend a day in the sun, it helps tan your skin and the spots fade. Also are you currently using any medication?

Sincerely,
PLC4ME
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Monday April 03, 2006, 06:06:32 PM
Hi Meredith,

I am sorry to hear about your PLC.  My daughter has had it since she was 2 and she is now going to be 8 this summer.  How extensive was your rash in the beginning?  How extensive is it now?  Have you noticed that it got better post puberty?  What about prepuberty compared to now?  I can relate to the swim lesson thing.  Something similar happened to my daughter when she was about 6.  Where is the distribution?  Arms, legs, face?  Worse on upper arms and legs?  All relatively flattish, or are some pussy/necrotic?  My daughter's luckily do not get pussy, etc..., since she has the chronic version (PLC). 

Sincerely,

J
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Monday April 03, 2006, 09:26:46 PM
When my son was 5, he was diagnosed with severe ADHD and I was told he would grow out of it when he reached puberty. He is now a 25 year old -- still with severe ADHD. There are many of us who post to this topic who are WAY past childhood and puberty and we suffer from PLC. I wouldn't put too much faith in the age-waiting game.

Whatever causes PLC to activate is still unknown.  It's like the Multiple Sclerosis theory that you contracted a virus at one time in your life and later, contract another type of virus that 'turns' the MS factor on. There are so many viruses that remain active in your system that are impossible to isolate.

My heart goes out to the children who have PLC but even more to the adults who suffer from it, never having lived through the stigma of 'wearing the pustules' in public before. PLC4Me and Meredith, Itchell and others can relate to the shunning we receive from those who don't understand that PLC is not contagious or contracted by something we 'did' or 'took.'

My PLC erupted for the first time last year, at age 49. There is no outgrowing it, you must adjust to the factors that bring on the mess and try to eliminate them from your life. Because of the MS, I am susceptible to chronic fatigue, stress and intolerance for heat. If I ignore these things, I can be assured the PLC will attack me with a vengenance.

I have the chronic version and get both types of break-out at the same time -- pustules and tiny pin-prick type rashes. The skin dries and tears, the pustules weep. From what I've researched and read, the effect on everyone is different. Beside the common health-stress with which everyone must deal, there is the matter of what you eat and drink and the effect of toxins in your environment (pollution, insecticides, metals, etc.).

There doesn't seem to be any commonality between those of us who suffer from this 'disorder.' What works for me doesn't work for Itchell, and she finds that he control using suppliments and food works best for her, oithers rely on Tetracycaline which is a poison to my body.

My intention today is not to insult anyone, I'm only pointing out that as much as we'd like a page from a book to tell us what will positively work to cure or control the PLC, or knowing exactly what the future prognosis will bring isn't going to happen for a long time.

I think I"m just having a bad PLC day...

Thanks!
elseaeff


Title: Re: Pityriasis Lichenoides Chronica
Post by: littlephe on Tuesday April 04, 2006, 10:52:55 PM
I have a question about PLEVA.

I've had this breakout since Feb 14th. I have had two different biopsy's from two different dr.s. One says possibly PLEVA or drug reaction and the other one says Pityriasis rosea. I just don't know what to think. What are the PLEVA symptoms you guys are having. I'm 34 yr old female and I am 7 wks pregnant too.

Mine started out with a little bit of a break out under my breast, then it gradually spread throughout my trunk area and around 2 weeks later it exploded down my arms on the insides, groin area (the folds) and the back of my knees. It was red and splotchy. When you look at pics on the internet it looks like rosea and PLEVA. Very weird.

Title: Re: Pityriasis Lichenoides Chronica
Post by: jen1 on Sunday June 25, 2006, 07:24:36 PM
Hi, Im new here. I live in the UK and I also have found out that ive got PLC  . It started November last year when I was 12 weeks pregnant, starting on the trunk and chest and spread all over apart from my face (phew!) My baby is 6 wks old and Ive still got it (i was hoping it would go!). Around or after the time the spots appeared I was ill from November all through winter with one virus after another, I seemed to get everything...Im not too bad now though! Im going to try out the light therapy soon, so fingers crossed eh! The Derm said its just something you get..no reason..we are not born with everything, things can just appear later in life! Reading this thread has made me feel better knowing that there are others going through the same experience and im so glad that some peoples skin has cleared!  :)
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Monday June 26, 2006, 03:33:40 AM
Greetings All!
   It's been awhile, I've had surgery on both of my knees -- a result of an overdose of an IV-infused steroid used to control multiple sclerosis exascerbations. It's amazing how doctors who have dozens of years of schooling can cause something like this to happen to a person. The surgery consisted of drilling into the core of my knees and inserting cadaver cartalege into the holes in the hope to grow new. After being off of my feet for more than eight weeks, I pray it works!
   What it all of this leads to is that I've not been able to get light treatments and I am now covered, once again in PLC. My husband put a small swimming pool in the back yard so I can exercise my knees (it's 8 ft. x 3 ft.) but it also allows me to get the needed sunlight for my skin. The doctor only just took my braces of my legs on Friday so I've just begun to use the pool. I'm very miserable, broken out with PLC and itching from head to toe - again with the exception of my face. This weekend is the first to spend in the sun, but very short times to avoid sunburn which would make me even more miserable than I've been.
   And I thought I was through with PLC! See what you get for thinking! :-[
May all have a blessed day and the best of luck with their fight with the wicked PLC!

Regards,
elseaeff
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Monday June 26, 2006, 06:56:44 AM
My skin is almost clear. Still a few dark spots which wont go away. I think they will be there forever now.

Anyway, I wish the best of luck to people who have this condition. I know how embarrasing and frustrating it can be at times. I pray doctors will find the cause and be able to cure it.

Cheers,
PLC4ME
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Monday June 26, 2006, 11:27:23 AM
Hi All!

Just checking in.  I saw the new post from Jen1.  Sorry about your diagnosis.  It is going to take a few years most likely.  Have they given you any information?  My daughter will be 8 this coming month and has had it since she was nearly 2.  Summers are good.  Of course, she is never PLC free, but even just regular sun exposure (you know how kids are, always wanting to play outside in the am) helps.  She doesn't sit there purposely tanning. 

PLC4me, glad to hear you are improving.  Have you been getting alot or a little sun, or do you think the improvement is the natural course?  Where are your PLC spots distributed mainly?

Elseaff, good luck with the knees.  I hope the PLC improves once you get out in the sun.

Where are you living?  (I know Jen mentioned UK).  We are in sunny Florida, and came from colder New England.  Tropical sun does improve alot more than northern sun; however, I am always leary of my daughter getting a major tan because of the whole skin cancer thing.

Take care,

Jahanara
Title: Re: Pityriasis Lichenoides Chronica
Post by: Mary1966 on Monday June 26, 2006, 05:05:33 PM
I was diagnosed with PLC over two years ago. I was 38 years old at the time. All the dermatologist could do for me was to offer Adoxa, which is an antibiotic. It seemed to help, however, it is sensitive to the sun light. I was watching my daughter play soccer and did not realize how senstive Adoxa was until I was suffering from severe sun burn. After doing some research, I learned that the natural sun and tanning does help to dry up the spots. I have to say, I am pretty much sick of tanning for two years.
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Monday June 26, 2006, 05:19:06 PM
Greetings Again!  :hi:

Thank you for your words of encouragement, Jahanara. I am located just south of Richmond, so I do get plenty of sun here -- I should say plenty of bearable sun here. There's been a nasty cold front lingering just to the west of us, sliding east and west, just enough to bring storms and sun hour by hour. I suppose it's OK since I burned myself yesterday and need some time before going out and doing it again! I'm a firm believer in the power of the sunlight and it's control over PLC. This time last year I was a mess, covered with oozing pustules that were literally driving me crazy! After spending three months with my primary care doctor who didn't know what do do, I was finally able to get into a dermatologist who diagnosed me instantly and had me on the road to wellness. I can't tell you what a nightmare it was to be covered with PLC and have no means of relief from the itch and sores. I had staff infections several times during the months before I finally had the 'disorder' under control.

The dermatologist gave me creams to help with the itch, which only made them worse because they were too heavy and robbed the skin of air. I've learned that only water-based creams work on PLC skin now. Finally, she had me use her 'Narrow-band UVB light box' 5 days a week, $20 a day and a round trip drive of 90 miles. As the cost of gas kept increasing, the cost of her treatments continued to get more and more expensive. Her nurse told me to ask her about a tanning booth. I did and she approved it (but not a tanning bed where you lay in someone elses's 'juices') so now I spend $25 a month and use a tanning booth for as long and often as I want, getting the same results as I was in her expensive booth. I still see my dermatologist 4 times a year, so I haven't given up with the experts.

During my 6 months of agony before the PLC was under control, I discovered there were certain types of creams and oils, cleaning 'rituals' and clothing that worked best for my condition. I'd be most happy to share them with you if you'd like to privately message me.

Knowing the pain and discomfort, public shame, and personal dismay I endured with my bouts of PLC, I can only say that my heart goes out to those children who have to endure the same. I'm sure you saw my earlier post when I 'spouted' to those who are waiting for puberty to cure their children's malady. I first encountered PLC at the age of 49. There are many different disorders that stump doctors and leave them with no choice but to attribute them to childhood and mark puberty as the turning point of the disorder's change. We have learned that is no longer the case.

Sunlight can be dangerous if not monitored, but in cases such as ours -- us with PLC -- it can be a blessing. You can use sunscreen and you can still monitor the time of sun that is received. But, look at your child and ask which is worse? As someone who suffers from the awful effects of PLC, I can tell you that a small bit of sun each day (my doctor told my that 5 minutes a day is all it takes) is more than worth the pain and suffering from PLC.

Have a blessed day!

elseaeff
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Monday June 26, 2006, 10:19:42 PM
PLC4me, glad to hear you are improving.  Have you been getting alot or a little sun, or do you think the improvement is the natural course?  Where are your PLC spots distributed mainly?

Hi, well I got alot of sun in the summer. It's winter now so no not much sun. I don't think the sun would do anything. I think the thing that helped the most was the tetracycline the doctor prescribed for me...
Title: Re: Pityriasis Lichenoides Chronica
Post by: EX-itchell on Tuesday June 27, 2006, 11:45:31 AM
Hi everyone,
I haven't checked in for a while because I have stayed clear.

- Elseaff I am SO sorry to hear that you're not doing well :( - Is there anything I can suggest to you that you haven't tried?  I was obviously lucky in not having the chronic version.  If you think of any information I could help with, email me seperately please.

I've continued eating lots of raw veg, some sprouting veg, and lots of fruit, with much less meat than previously, as I don't like it so much any more.

For the newcomers I had PLC for about 8 months and have no signs at present.

The dark spots that PLC4ME mentioned took longer to go, but after another few months they did disappear and I have no visible signs.

Good luck to everyone :bighug:

Ex-itchell
Title: Re: Pityriasis Lichenoides Chronica
Post by: jdavis331 on Thursday July 06, 2006, 08:25:27 AM
Hello all... I am 28 and was diagnosed with PLC about 4 wks ago (but have been living with this lovely disease for about 12 weeks now)... I know that some of you (or your children) have had the funk (as I call it) for much longer, so sorry if I complain too much...

So, about 12 weeks ago, I started getting what I thought were hives on just one of my arms... I am a nurse (for kids... so I thought it was surely some funky infection/virus I had picked up)... took benadryl (topical and oral) with no luck then tried steroids (topical and oral). Once again, no luck... after this, I decided to take my butt to the doctor (at this point, I had hundreds of sores that looked almost like petichea on both of my arms and on my abdomen)... primary care physician had no idea what this was and after running blood work for just about every virus in the book, sent me to a dermatologist. after being out of work for 3 1/2 weeks, and with what seemed to be thousands of sores everywhere but my face (there was not a single square inch of my body that didnt have at least 3 or more sores), I was finally diagnosed with PLC (by biopsy)... Dr. prescribed more steroid cream (which did no good) and tetracycline (which I decided against taking... taking an antibiotic for an auto-immune disorder didn't make much sense to me)... I was told it could last anywhere between 2 months and 2 years... being the optimist that I am, I thought, OK... well, I am half way to the minimal time it can last... I will just suffer through it...

Last month, I went to Mexico on a pre-PLC planned trip... after much dwelling, I decided that I didnt really care what people thought of my funk and went out to the pool in a bikini... man, the looks I received... I wanted to just melt into the concrete when people stared at me getting in the pool (i swear they were saying "i hope she is not planning on getting in the water with me!")... I have pretty good self esteem, but this definetely knocked it down a couple of notches... However, since I had read everywhere that sun was the best prescription, I went out everyday and tried not to care about what anyone thought... It really was amazing what the sun did for me... Within 2 days, all of the sores I had began to dry up and by the time I got home (1 wk later), the sores were almost gone... yeahhhhh!!!!

Three days later, I wasn't so happy... now, instead of sores (which were virtually gone), I had hypopigmented spots all over me (really, no exaggeration, I looked like I had leopard spots... some people at a softball game actually asked me how I did it, thinking I had done it intentionally...)... I was under the impression that the hypopigmentation only affected darker skinned individuals, but I am a white girl and still have the lovely leopard spots... luckily they are fading and hopefully will not be permanent...

Now, 2 weeks post trip, the sores are returning... and this time I am itching... badly... whereas before I had no itching or pain associated... I haven't figured out whether the itching is from dry skin or the disease process, but eucerin and aquafore does appear to help... so I just try and keep myself lubed up (didnt realize how tideous putting lotion on 3 times a day can be... quite nerve racking at this point)...

So, I found this web site a couple of days ago while looking up the whole hypo-pigmented thing... I am glad to see there ARE, in fact, other people that suffer with this horrible funk... but I am not so sure I feel any better about it after reading about some people who have had this for years... I guess I just wanted to get some of this off of my chest since nobody that I know understands... I am still trying to have a positive outlook about it... I am planning on starting tanning at a tanning bed next week, in hopes that it will keep the funk under control... does anyone know what the minimum effective time and how many times a week I should go (I dont want to look 80 at 40 from too much tanning, so minimum is key)???

Much appreciation for listening to my wonderful complaints,

Jenn
Title: Re: Pityriasis Lichenoides Chronica
Post by: princesslaura on Thursday July 06, 2006, 04:25:44 PM
Heya Jenn

sorry to hear you have PLC to nd that its really bad at the moment.I'm 15 and got PLC about 3 years ago, the consultant says it should go in time. I had this ultra violet light treatment for mine at the local hospital which was basically a sunbed that you stood up in nd i had it three times a week. I started only being in there for 10 seconds but then it gradually worked up to a minute after endless trips. I did this treatment for a whole summer and i saw very little difference in my skin, nd i gt white rings around my eyes hehe. i've had PLC for about 3 years now and i find that the best thing for it is moisturising and going in the sun when possible, and i can fully relate to how you feel when you go in to the sun i get people coming up to me asking if i have chicken pox or if i'm conageous and its sooo annoying, but i've learnt to ignore it now. When my skin gets really bad i use hydrocrotisone cream perscribed by the doctor but try not to use it too much because of the effects the steroids have on the skin but it seems to work welll when i do use it.

Best of Luck
laura xxx  :)
Title: Re: Pityriasis Lichenoides Chronica
Post by: EX-itchell on Friday July 07, 2006, 10:06:03 AM
Hi Jenn and welcome to the forum,

I am a plc sufferer in remission - who knows if it has gone away permenantly after all.

Please consider what you eat and drink, because I am quite sure my problems stemmed from the inside NOT the skin, so the derms were useless.  I was under great stress for about 2 years which finally ended and got spots some months after.  I think  the plc for me was caused by a mixture of stress and toxins.  So I went on a really healthy diet cutting out all alcohol, and wheat amongst other things, and after a few months the spots stopped occuring, and now 5 months after that, have all but vanished.

Whilst I realise my methods may not be successful for everyone - particularly children who are unlikely to have got the disease for the same reasons as me - I truly recommend you consider a careful diet. 

My personal view of sun is that it may suppress symptoms temporarily, but they will not disappear through tanning, and will bounce back when you are out of the sun.

I am happy to give you details of the diet if you want them, but whatever you decide, I wish you the very best of luck.

Consider wearing only pure cotton as it allows the sweat to escape and avoids heating you further which in my experience resulted in more spots.

All the best ,
EX-itchell
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Tuesday July 11, 2006, 01:48:33 PM
Hello Everyone,

Just checking in since it has been a while that I've posted.  I always keep an eye on the thread though.  My daughter's skin is doing its usual summer improvement.  Of course the PLC is ever present, quite spotty.  Esp on upper arms/ upper legs. and to a lower trunk.  Summer has improved it.  We are doing swimming this week.  Florida sun is so strong.  She will be eight at the end of the month.  I still have a while to go til puberty...Fingers crossed!

Take care,

Title: Re: Pityriasis Lichenoides Chronica
Post by: jdavis331 on Saturday July 15, 2006, 05:33:53 AM
Hey guys... thanks for the input... sorry I haven't responded yet...

UPDATE:

The "leopard spots" on my arms are almost completely gone (yeah!) but now they are on my legs and abdomen (I am assuming that is because this is how the progression of the sores came on), not so bad, though, I can deal with my legs (they don't look near as bad as my arms did). The sores have returned, but definetely not near as bad as the first "episode" (actually, more like five episodes back to back). The itching is still a problem, but I have determined that it is from dry skin b/c when I lube up, I'm good for about 5 hours... if I slather on the lotion before the 5-7 hour mark, I'm usually ok... I haven't started tanning and decided against it for now.  Decided to just deal with it... now that the initial shock is gone and now that I know all 'episodes' aren't necessarily gonna be as bad as the first, I think I can deal... I'll just keep my fingers crossed...

I'll keep you guys posted!!!

Thanx,

Jenn
Title: Re: Pityriasis Lichenoides Chronica
Post by: Dianaoon on Tuesday July 25, 2006, 02:05:11 AM
Dear Everyone:

I've been reading the recent posts on PLC, and wonder if anyone can give me their views on what's going on with my son. He's 3.5 yrs old, and has been having plc since he was 16 months and was only diagnosed two months ago (we were told previously it was allergies and blood tests confirmed egg and banana allergies).

Since then, we've tried sun (10 mins a day, daily, then alternate days) which helped, but new spots keep appearing, though sparser. (we live in the tropics, hot and wet all year round). Even so the dermatologist is andamant that he has to "treat" my son till no new spots appear, because he maintains that if the disease "progresses" then we run the risk of damage to his other organs and tissues. Has anyone been told this before?

Because of this, my son is now on oral steriods for 8 weeks, i am told it's a low dose and should pose no long term effects, but my issue is 3 weeks into this course of treatment, his spots are the same -sparser, but new ones keep appearing. My question is has anyone else found their dermatologist strongly advice continued treatment with steroids, and what are the downsides of this?

My son is also on fish oils and probiotics and vitamin c, as advised by the derm.

I am just wondering how much more steriods we should agree to and will the harm outweigh the good the medication does?

I've read the stories on hypopigmentation and my son's skin too darkened considerably with the solar therapy, but having begun to use pure sesame oil as an after bath and before bed moisturiser/massage oil seems to help considerably with the dryness and flaking and hence, reduced the itching. we use a water based simple cream as an emollient and bath lather, rather than soap, and that too has helped with the dryness and itching.

Thanks everyone,

Diana
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Tuesday July 25, 2006, 03:31:21 PM
Hi Diana,

Don't listen entirely to your derm.  It doesn't sound like he knows what he is talking about, with internal organs etc...  I have a girl who is nearly 8 who got PLC before she was 2.  Our children will not have it forever..  It will burn itself out.  The question is when, but my old doctor (we moved away) was well versed in PLC, since he saw quite alot of it over his many years of practice.  All the kids with the rare skin conditions went to him, he was based in Boston Children's.  I remember asking him when she was first diagnosed, why it didn't affect other parts of her body.  Even though it is believed to be an immune-based condition, it is solely a skin condition.  My daughter, aside from her skin, is hardly ever sick.  It is solely limited to the skin.  I don't know what your derm is talking about.  It is not like different types of psoriasis which can sometimes affect joints, etc...  From what I understand, the treatment of choice is small amounts of natural sun, and sometimes, people benefit from a trial of erythromycin.  My daughter did not benefit.  My old doc found that over the years, erythro didn't do much to any of his patients.  Steroids don't seem to do much (my own experience).

I am going to write you an excerpt of my Boston doc's letter that he gave regarding my daughter's PLC, prognosis, etc.. perhaps it will put your mind at ease...(I like to read it when I get a little down sometimes):  This letter was written when she was 4, and had had it for 2 years:

..."Patient is a 4 1/2 year old who carries the diagnosis of pityriasis lichenoides chronica.  Her skin lesions first appeared on her legs in March 2000 and spread to her trunk and arms.  She was seen by Dr..... who obtained a skin biopsy in the fall of 2000 that confirmed the diagnosis.  She has been treated with topical steroids and a trial of Elidel, which has no effect.  The lesions have been asymptomatic.   On physical examination, this was a well=appearing child who had a widespread eruption that consisted of erythematous scaling plaques ranging in size from 1-4 mm.  They were most pronounced on her flexural arms, inner thighs, and buttocks.  There was a sparing of her face, palms and soles.  My impression was that her skin eruption was consistent with PLC.  I told her parents that this condition may remit at any time.  In my experience, most patients improve by puberty.  Topical therapy is usually not effective.  There may be an improvement with natural sunlight or ultraviolet light treatments.  In rare instances there may be a progression to cutaneous T-cell lymphoma.  I recommended that she be seen yearly by a dermatologist."

Diana,   I used to be really freaked out about the whole CTCL.  Of course it still worried me a bit, but not as much since it is so rare.  Also, I heard on the news that any one with these types of conditions, particularly psoriasis, are at slightly elevated risk for CTCL.  I know a few people who have had psoriasis their whole lives, and they are "healthy". So it doesn't worry me much anymore. 

I would continue on with the moisturising, since as you know, it makes skin dry.  It is good you are in the tropics, a little more sun is always good.  We live in a subtropical climate now, so we get alot more sun then we did in Boston!  If it were me, I would not do oral steroids.  Perhaps  the occassional topical steroid for spots (but I didn't notice a significant difference).  Don't worry, it will not spread to your child's organs.  This is a rare condition, and there are other derms I have met in the past who are not familiar with PLC.  Your derm sounds like one of them. I just hate to have him alarm you so much!  How extensive are his spots at the worst and best?  What time of year are they at their worst?   Does it spare his face for the most part?  What about palms/soles?  Does he have only chronic variety?  Are some necrotic/itchy/bleeding (the acute version called PLEVA)? Are you just letting him play out a little in the sun or is he actually in  UV box?  MY doc cautioned against the UV box therapy, given her age, and the fact that natural sun improves.  Perhaps if she is (god forbid) having it as an adult, she might opt for it...but as a child, I am not going to do it).  Where are you from? 

Take care, and don't let the docs let you fret with this nonsense about internal organs.  No matter how much light therapy he gets, he will still get new spots for quite some time.  It will have to burn itself out, but it is common for it to grumble on for several years.  Your derm needs to read up some more on PLC in some of the journals. 

Jahanara

"Patient is a 

Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Tuesday July 25, 2006, 10:41:19 PM
Diana, ask your derm about tetracycline. I took it for a few months and my spots slowly disappeared. I didn't find the UVB did anything. If your son takes tetracycline, he must stay out of the sun though.

I wish you and your son all the best and hope the PLC will go away fast.

Thanks,
PLC4ME
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Wednesday July 26, 2006, 12:02:47 PM
PLC4ME,

Are you PLC free for now after the tetracycline?

Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Wednesday July 26, 2006, 10:17:02 PM
PLC4ME,

Are you PLC free for now after the tetracycline?



Yes I still have a few spots fading though. I seem to have got worse acne since so I might be going on Roaccutane..
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Wednesday July 26, 2006, 11:55:26 PM
PLC4ME, that's great news!!  I have questions for you:

So with the exception of a few spots, you are clear? 
How long did you have it for? 
How extensive was it at its worst? 
When did you start tetracycline, and how long were you on it til you noticed results? 
Were you biopsy diagnosed? 
Where are the last of your spots now? 
Did you ever tan a little to get rid of them?  You mentioned UVB. 
Do you think it was directly attributed to tetracycline, or do you think you were fading out anyway?

I am encouraged by your news because it gives hope for my daughter.   Please let me know.  Thanks,

J
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Thursday July 27, 2006, 04:37:30 AM
PLC4ME, that's great news!!  I have questions for you:

So with the exception of a few spots, you are clear? 
How long did you have it for? 
How extensive was it at its worst? 
When did you start tetracycline, and how long were you on it til you noticed results? 
Were you biopsy diagnosed? 
Where are the last of your spots now? 
Did you ever tan a little to get rid of them?  You mentioned UVB. 
Do you think it was directly attributed to tetracycline, or do you think you were fading out anyway?

I am encouraged by your news because it gives hope for my daughter.   Please let me know.  Thanks,

J

Hey Jahan,

Yeah I haven't got any new spots for about 10 months now... I am pretty much clear at the moment.

I had it for about 6 months.

At it's worst was probably the first month I got it, it was everywhere except my face. Got right up to my neck, all over my arms and chest and legs. First started on my stomach. Then the spots just stayed there and didn't get any better while I was on the UVB treatment.

I started tetracycline when I went off the UVB, and the spots went away after about 2 bottles of tetracycline... So about 2 months.

Yes they confirmed I had PLC.

The last of my spots are a few small dark ones on my hands and large faded ones on my leg...

I got some sun but that didn't really work. The dermatologist told me to take cold showers aswell to stop them flaming up. But I was so sick of that so I just took warm showers and it didn't flame up, it didn't seem to matter at all.

I think it was because of tetracycline, but I don't know.. It might have just been fading out when I started taking the tetracycline.

I hope your daughter gets over it, I know how embarrasing it can be and frustrating at times. I just kept thinking to myself I will never see my skin unspotless ever again. I'm so happy that it is now gone. You should really consider finding out about tetracycline..

Thanks,
PLC4ME
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Thursday July 27, 2006, 11:53:17 AM
Hey PLC4ME, thanks for the info.  You didn't have it very long, you are lucky.  My daughter got it when sshe was 2 and she is nearly 8.  They told me it should burn out by puberty.  Something happens with the immune system which changes from childhood to teenage hood I guess.  She is too young for tetracycline, because it can damage developing teeth.  It is not safe for children tot ake it until they are 12, so perhaps, if I am still dealing with this in a few years, I will have her try it at 12. 

I am so glad for you!  It makes me happy to know that there is an end in sight.  Did you ever get an occassional spot on your face?  My daughter occassionally gets them around her chin/lower jawline, but they are smaller. 

Please keep checking out our link now and then, because it is so refreshing to hear some good and encouraging news!

Sincerely,

J
Title: Re: Pityriasis Lichenoides Chronica
Post by: Michelle12 on Thursday July 27, 2006, 06:15:08 PM
Hi. This is my first time on here. I'm 21 years old and I was just diagnosed with PLC about a month ago. I've had these spots since Feburary of this year. It started out very similar to Pityriasis Rosea where I had one large spot and then about 3 weeks later a lot more spots came. The first dr I went to thought it was PR and said it would go away in about 4 weeks and if I wanted to help it go away faster I should go tanning and use this steriod cream that he gave me. The steroids helped ALOT but once I stop using them they come back. I found that tanning helped a little bit but I didn't see a drastic change in the spots. I decided to get a second opinion from another derm and he said I have PLC. He gave me a 10 days supply of Erythromycin and told me to use Elidel and to stop using the steriod cream because it's not good for you. Erythromycin and Elidel did not help me. The only thing that happened was I got a lot more spots and they are a lot bigger and redder than they ever were before. I have them mostly on my back and my legs but most of my spots are very large in size. I have 3 on my chest that are all about 1 to 1.5 inches long.

I have not had a biopsy done yet but I am getting one. My appointment isn't until next Friday and it will still take about 2 weeks after that to get the results they said.

I have a little bit of itching but I find that if i keep lotioning my body that takes care of most of the itch. I use Cetaphil lotion which works really well. My derm also gave me tetracycline to try since I read about that on here. However, he doesn't think it will work since Erythromycin and Elidel didn't work. I have been on tetracycline for almost 1 week now and I haven't seen a noticeable difference but I understand it takes quite a while to start working. My derm said the next step would be UVB treatment but I'm not very convinced that will make a difference either.

Recently I have noticed that instead of being a full red spot, a lot of my spots have turned white/pink in the middle and darker on the outside. Does anyone elses look like this also?

I completely understand everyones frustration with this issue. It is extremely embarassing. Especially in the summer months. The sun is supposed to be good for PLC but I don't want to wear shorts or any kind of clothing where other people can see because they automatically start asking questions and thinking I'm contagious. I also cant be in the sun if I'm using tetracycline. When I get really down about it I find I often want to resort back to the steriods because at least that got rid of them temporarily and no one could see them. But I have to talk myself out of doing that because I know its only a temporary treatment. They will come back just as strong as before when I stop using the steriods.

Thank you for listening to my complaints.

Michelle
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Friday July 28, 2006, 05:44:24 AM
Hi. This is my first time on here. I'm 21 years old and I was just diagnosed with PLC about a month ago. I've had these spots since Feburary of this year. It started out very similar to Pityriasis Rosea where I had one large spot and then about 3 weeks later a lot more spots came. The first dr I went to thought it was PR and said it would go away in about 4 weeks and if I wanted to help it go away faster I should go tanning and use this steriod cream that he gave me. The steroids helped ALOT but once I stop using them they come back. I found that tanning helped a little bit but I didn't see a drastic change in the spots. I decided to get a second opinion from another derm and he said I have PLC. He gave me a 10 days supply of Erythromycin and told me to use Elidel and to stop using the steriod cream because it's not good for you. Erythromycin and Elidel did not help me. The only thing that happened was I got a lot more spots and they are a lot bigger and redder than they ever were before. I have them mostly on my back and my legs but most of my spots are very large in size. I have 3 on my chest that are all about 1 to 1.5 inches long.

I have not had a biopsy done yet but I am getting one. My appointment isn't until next Friday and it will still take about 2 weeks after that to get the results they said.

I have a little bit of itching but I find that if i keep lotioning my body that takes care of most of the itch. I use Cetaphil lotion which works really well. My derm also gave me tetracycline to try since I read about that on here. However, he doesn't think it will work since Erythromycin and Elidel didn't work. I have been on tetracycline for almost 1 week now and I haven't seen a noticeable difference but I understand it takes quite a while to start working. My derm said the next step would be UVB treatment but I'm not very convinced that will make a difference either.

Recently I have noticed that instead of being a full red spot, a lot of my spots have turned white/pink in the middle and darker on the outside. Does anyone elses look like this also?

I completely understand everyones frustration with this issue. It is extremely embarassing. Especially in the summer months. The sun is supposed to be good for PLC but I don't want to wear shorts or any kind of clothing where other people can see because they automatically start asking questions and thinking I'm contagious. I also cant be in the sun if I'm using tetracycline. When I get really down about it I find I often want to resort back to the steriods because at least that got rid of them temporarily and no one could see them. But I have to talk myself out of doing that because I know its only a temporary treatment. They will come back just as strong as before when I stop using the steriods.

Thank you for listening to my complaints.

Michelle

Hey Michelle,

Yeah I know how embarrasing it can be.. I really hope the tetracycline works for you. Mine also developed around feburary. Something about the season maybe. The next summer I was really worried I would get spots again. I think when I had it alot of people stayed away from me because they thought it was contagious or something..

Thanks,
PLC4ME
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Friday July 28, 2006, 05:48:13 AM
Hey PLC4ME, thanks for the info.  You didn't have it very long, you are lucky.  My daughter got it when sshe was 2 and she is nearly 8.  They told me it should burn out by puberty.  Something happens with the immune system which changes from childhood to teenage hood I guess.  She is too young for tetracycline, because it can damage developing teeth.  It is not safe for children tot ake it until they are 12, so perhaps, if I am still dealing with this in a few years, I will have her try it at 12. 

I am so glad for you!  It makes me happy to know that there is an end in sight.  Did you ever get an occassional spot on your face?  My daughter occassionally gets them around her chin/lower jawline, but they are smaller. 

Please keep checking out our link now and then, because it is so refreshing to hear some good and encouraging news!

Sincerely,

J

Hey Jahan,

Yeah I got a some on my neck.. Mainly on my chest though.

PLC4ME
Title: Re: Pityriasis Lichenoides Chronica
Post by: Dianaoon on Friday July 28, 2006, 04:42:10 PM
Dear Jahan:

thank you so much for your detailed reply,, and that excerpt from your daughter's doctor. It's good to know that we're not facing long term damage of any sort.

My son too, thankfully, is not sickly at all, apart from the spots.

The spots, at their worst, about three months ago, covered most of his body but not on his palms and the soles of his feet, nor scalp. Now, they are much sparser, just on his buttocks, a few on his arms and a little more on his legs and an occasional spot on his face (there are four now) The spots are very small, pinpricks, really, though at any time, two or three maybe larger and redder, but they are almost never angry, open sores.

Got my hubby to read your post too, and we've decided that we will stop the steroids once this course is over. we will change doctors too, if needs be. Topical steroids (right now my son uses elomet) don't seem to do much either way for the spots. We used Elidel for a while last year, it helped, but there was that scare with the mice and cancer so we stopped that.

does your daughter have allergies ?

As I said, my son tested positive (blood RAST tests) for egg and bananas at 20 mos, but we're told by the allergist he might have outgrown that. Having said that, we notice that he gets more spots when he's had too much junkfood, or just any non-home made food. As a consequence, most of the things he eats is homemade. We find that helps somewhat, though the spots really got bad three months ago, despite the careful eating. This was what prompted us to seek second opinions, and led us to the PLC diagnosis. We suspect that my son is sensitive to additives and preservatives, for which there are not tests, so we strive to keep his diet as unprocessed as possible, making it organic as much as we can. I've noticed adult sufferers saying they get relief from cleaner diets, but since i can't expect my child to chug the organic vege juices and munch on celery sticks, i do my best to let him have as much veges and grains as possible.

Thank you so much for your concern and advise and words of encouragement, it's comforting enough to know i am not alone,

Diana

he gets plenty of veges (organic)
Title: PLEVA
Post by: spotty spot on Wednesday November 01, 2006, 09:25:58 AM
Hi! 

I can't say how happy I am to find you all! I am a 22 year old who has had PLEVA since January '06. I have classic PLEVA with intense flu like symptoms, fatigue, swollen lymph nodes, crops of red raised then ulcerated lesions which scar. I've had crops all over my body and face.

More importantly, I am a happy person with a great life! I had originally not sought a support network such as this as I didn't want PLEVA to be in anyway my identity. I am also a medical student and thus I have been doing as much reading on PLEVA as I can. I have only now turned to trying to find people to talk to about this as I am getting sick of PLEVA being around. I have had little support from my friends and family as they don't see how much it affects me. The worst part is the fatigue and the flu symptoms, well actually the worst part is the spots and the scars on my arms and my face. Although i don't like to admit it, the asthetics of it do worry me.

I am thankful that the first Dermatologist I went to had experience in PLEVA. I am also grateful for having a leading skin pathologist in my city how knows his stuff when it comes to PLEVA, and happens to be one of my university lecturers. That said, it took 6 months to find these guys. In that time there was a miriad of GP and other doctor related tests. They even quarantened me from going outside for 7 days at one point! My case was convoluted a little (as i'm sure everyone's is) by the fact that I've travelled and work in many developing countries and the first spots arrived with a 5 week intense viral conjuntivitis and pharyngitis. So i've been tested for every infectious disease under the sun along the way!

In terms of treatment:
I have been on high dose Erythromyocin since June '06. It has results - Instead of having huge intense crops of spots spontaneously appearing in different regions (I counted 60 new ones in a 15 min once) I now just a few. And the flu like symptoms of tiredness have definately decreased. It was quite dramatic when I stopped taking the ES for a few days and i ended up in bed sleeping for 25 hours straight. 
I also have topical steroids for new spots that come up and topical antibiotics for open spots to prevent infection.
There has been talk of light therapy but I have fair skin so I don't want it.

In terms of scaring, ofcourse they are there and they are very visible. I was using Vit E but my pathologist told me to discontinue this as I was having a hypersensitivity response to it. So I now find prevention the best treatment for the scars - not to allow new spots to loose their top or lesions to become ulcerated. Steroids, not scratching and generally being careful is my only measures for this.

I would like to talk with anyone about anything related to PLEVA or PLC. I would like to learn from your experiences and help others with mine where able.

Ah there you go. Enough of this long message! Too long infact!

Title: Re: Pityriasis Lichenoides Chronica
Post by: spotty spot on Wednesday November 01, 2006, 09:49:46 AM
Diana - I think you should get a second opinion. Oral steroids in children should be limited and only used as a last resort. If you are in a place where you can access other dermatologists then a second medical opinion would probably do your son good. All the best.

Title: Re: Pityriasis Lichenoides Chronica
Post by: spotty spot on Wednesday November 01, 2006, 09:57:06 AM
informative and cohesive resource on both PLC and PLEVA -
http://www.emedicine.com/derm/topic334.htm

sorry i've posted so much in one go. i am just so happy to find you all!
Title: Re: Pityriasis Lichenoides Chronica
Post by: EX-itchell on Wednesday November 01, 2006, 01:05:50 PM
Hi Spotty spot and welcome to Skincell!!

I've had plc and am in remission (who can say that it won't come back).  The rules to help you I would give as follows:

1. Stay cool! I love exercise, but during the time I was getting new spots I couldn't do any exercise that would make me sweat as it encouraged more spots and the worst is spots on your chest......

2.  Use an ice pack to cool you down at night, because heat makes you itchier, which makes you scratch, which worsens the spots...

3.  Wear pure cotton only.  I tried every material and only cotton lets the skin breathe to keep you cool...

4.  No baths and shower as little as you can.  Shower should be luke warm.

5.  Watch your food.  For me I couldn't eat a big meal in the evening, as I'd be too hot at night.  I ate light in the early evening and was better for it.

6.  Red meat and shell fish are too heavy and heat you up.  Take care when you eat these.

I used a cream by Vaseline called Intensive Care Dermacare and liked that with occasional Eucerin (10%).  Morning and night I covered my body in pure sesame oil, but lots of people here swear by pure coconut oil.  I found oil nicer to use than things like aquaeous cream and it went in, without disappearing.

The asthetics of the disease are horrid, and the constant desire to itch removes you from the people you're with as you struggle mentally with it.  Even beloved family can't understand why it seems so bad to you, but anyone on this site WILL UNDERSTAND!!!!

The scars have now left me, except two, which are on their way.  I have got through tons of useless cream, and bottles of oil which I still use to keep my body moisturised.  I believe mine started due to stress and a virus combining, and I had to get both of those out of my body.

I might also recommend some exercise like yoga if you can cope with regular clothes.  It might make you feel better mentally.

Email me for anything else you want.

Take care, and think of us as your spot-relations. :hugs:

EX-itchell
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Wednesday November 01, 2006, 08:09:13 PM
Hey spotty,

I had PLC, and had spots last year but since then they've gone and only 1 or 2 faded scars remain now. Just before my spots started fading, I was on tetracycline which was very effective. I'm glad you found someone that specialises in PLEVA, my dermatologist put me on the light treatment, but that didn't seem to work, just seemed to give me a few more moles so I wouldn't try it. Also he said to have cold showers, so every morning I had a pretty cold shower which helped keep the spots from flaring.

What do you think caused the outbreak in you? and where did it start. (i dont know if PLEVA is much different to PLC)...
Title: Re: Pityriasis Lichenoides Chronica
Post by: leenasmom on Thursday November 02, 2006, 09:20:07 PM
Similar experience with my daughter diagnosed with PLEVA in August, 06. We went the route with dermatologists briefly and they prescribed expensive topical steroids which only darkened her spots. I then opted for a nutritionist who had her perform a 24 hour urine draw which was submitted for analysis. We immediately pulled her off dairy products and her rash has all but disappeared. She was completely covered (trunk, legs, arms and a few on her neck and face) but is clearly up nicely. I am paying strict attention to diet and also trying to wean her off sugar as much as possible. I am thrilled at the initial results but tentative as I hear this is often a recurring condition.

The are suspecting that her pituitary gland has been malfunctioning (sending the wrong internal message to other hormones) due to the onslaught of all of the growth hormones put in our milk . . . it is criminal!! Your doctor's tell you to drink more milk for the calcium, but our commercial dairy products are chuck full of pollution!
Title: Re: Pityriasis Lichenoides Chronica
Post by: spotty spot on Thursday November 02, 2006, 10:46:12 PM
Wow this is so exciting! you guys really are all here! i've never used an online forum before but this is awesome!!!!!

Ex-itchell, thankyou for all your tips and ideas. They are much appreciated. I haven't heard this idea of heat. I will investigate ways that i can incorporate cooling down into my life. Not exercising is a bit of an impossibility for me! And I live in a very hot climate (australia). But I'm sure there are ways around it - diet and cold showers sound good.

I don't actually get that itchy. So I really don't put any ointments on my skin as it just makes clothes and bed sheets so greasy. Have you found ways around this?

PLC4ME, It is so exciting that your scars have faded! That is just fantastic! I'm not sure what started mine. When I started getting spots I was really relaxed. I was on holidays and at the beach with my sister for a month. But I only got a few then. The major crops started coming about a month after that. At that time I was very very sick for about a month. so i don't know really, proabably a virus triggered it... But PLEVA is a hypersenstivity reaction - that basically means that my white blood cells have lost their ability to recognise that my skin is me (not a bug), so they attack my skin thinking it is a bug - a.k.a. autoimmune. So my problem now is to get my immune system to CHILL OUT and stop attacking me!

As for PLEVA v PLC. It is my understanding that PLEVA and PLC are not the same disease but they are the same spectrum of disease. Like a colour chart of Red (PLEVA) to Yellow (PLC) with gradients of orange between them. My doctor thinks that I am somewhere in the middle of that spectrum, that is, I am a reddy orange! Does that even make sense?!?! anyway, they are very similar mechanism underlying them with different appearances.
 
Leemasmom, am so very happy that you came across someone who could help your daughter. She is so blessed to have you as her mum who cares about her and is obviously involved in her health. Go good mums! I am very intrigued about this dairy product situation. I will definately look into this, I have a pretty healthy diet. But i do love dairy - maybe i'll give it a try.
How old is your daughter?  A short burst of activity is normal in kids with PLEVA. most common duration of the illness is 10-11months supposedly. So I'm not surprised things cleared up. However, with adults the course is usually much longer, anything up to decades. But that's not to say it's not the same mechanism. So thankyou very much for your tips. i will definately think about it.

I encourage you all to keep on keeping on in your lives as well as with whatever ailments you have in your bodies!
"Being human is a tough gig, give that old soul of yours a hug!" - Paraphrase of Niche by Kris on Northern Exposure
Title: Re: Pityriasis Lichenoides Chronica
Post by: spotty spot on Thursday November 02, 2006, 10:50:41 PM
Princess Laura, I want to encourage you for being such a strong and couragious person! keep on being wonderful! I am sure your PLC will settle in time. But while it is here, you are so much more than some spots on your skin and hassles of a medical condition! You are a worth while beautiful person!  :)
Title: Re: Pityriasis Lichenoides Chronica
Post by: Angela7 on Thursday November 16, 2006, 02:58:58 PM
Hello fellow Pleva moms & sufferers.  I haven't checked in in a while but always love the wonderful advice and support that we can all get from each other.  My 7 year old son has had Pleva for 5 years now.  He is pretty spot free right now perhaps still the carry over from a lot of sun this past summer.  Last year he also had a pretty good winter.  When they say most kids outgrow it most agree that it seems to kind of peeter out over time.  Maybe the slow burn out has begun after so many years??  At this point we do nothing to treat him.  Just as much safe sun as he can get in the summer and one year we went to Florida for Spring break when he was absolutely covered.  It has always been in our lives so we are all very used to it and he rarely comments on it except to say "I have a lot of spots right now" or vice versa.  Over time I have learned that the less I obsess about it the better for him (although that can be mighty tough when he is covered).

I was reading adults talk about Tetracycline but just wanted to let parents know that Tetracycline is NOT recommneded for young kids, as it causes permanant teeth to be stained when they come in.   

Take care everyone and good luck, Angela
Title: Re: Pityriasis Lichenoides Chronica
Post by: jen1 on Sunday December 03, 2006, 10:12:50 PM
 ;D Hi, sorry but I have not logged on for ages, been sooo busy with new baby and toddler!!!. Last time I  said that I was getting light therapy. As mentioned before, I got PLC at the start of my second trimester of pregnancy which was october last year. I went to the Dermatologist and they did not
give me any answers, were very matter of fact in that the condition usually lasts about a year or so and it was not pregnancy related and cause is unknown. Anyway, to cut a long story short, the spots were itchy to start with, were around my chest and gradually spread all over my body. Just as I thought they were clearing, they would attack another part of me! Last summer was dreadful, I was so upset. I went to the dermatologist expecting to be referred for light treatment and was told that they did not recommend it justyet! They did not want to increase any risks later in life of getting skin cancer and when I thought about it...I agreed ...nor did I! I asked them "in their experience what did they think the best thing was to do"..I was not keen on taking any drugs...I just wanted to get my body back to normal after having a baby! I was told "do nothing" that would be the best thing and they were sure that it was clear up. He did moan at me for wearing jeans and trainers in the summer. My legs at the time looked horrendous, bright red spots covered them and I could not even shave them, spotty and hairy! There was no way I was going to wear a skirt to allow air to get to them. I was even paranoid of sitting in my garden..... I just felt sooo bad. Anyway, that was my low stage and after that I just carried on and blanked it all out really. I didnt take anything, go for light therapy or even put moisturising cream on. The funny thing is about six weeks ago I noticed the spots just disappeared!!!! Ive got the odd mark of an old spot and thats it.  It feels really weird writing this...I still cant really believe it.  My baby boy is now six months old and its been exactly a year since I got PLC. The only place I didnt get the spots was my face though I did get some around the eye. Now nothing! Anyway, I thought I must come on and give others hope as it does get a bit depressing when some people have had it for years. They always said they didnt know the cause and Im wondering now if thats because the cause is different for everyone. For me, I personally think it was hormonal, something was triggered by the pregnancy but hey thats just my own personal opionion! I really do hope and think that the little ones who have it will be plc free at puberty! Funny but my derm was right, he said around a year on my first visit. Ive really gone on now...sorry! Good luck to u all and I will let you know if it comes back.  ;D
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Sunday December 03, 2006, 10:32:13 PM
;D Hi, sorry but I have not logged on for ages, been sooo busy with new baby and toddler!!!. Last time I  said that I was getting light therapy. As mentioned before, I got PLC at the start of my second trimester of pregnancy which was october last year. I went to the Dermatologist and they did not
give me any answers, were very matter of fact in that the condition usually lasts about a year or so and it was not pregnancy related and cause is unknown. Anyway, to cut a long story short, the spots were itchy to start with, were around my chest and gradually spread all over my body. Just as I thought they were clearing, they would attack another part of me! Last summer was dreadful, I was so upset. I went to the dermatologist expecting to be referred for light treatment and was told that they did not recommend it justyet! They did not want to increase any risks later in life of getting skin cancer and when I thought about it...I agreed ...nor did I! I asked them "in their experience what did they think the best thing was to do"..I was not keen on taking any drugs...I just wanted to get my body back to normal after having a baby! I was told "do nothing" that would be the best thing and they were sure that it was clear up. He did moan at me for wearing jeans and trainers in the summer. My legs at the time looked horrendous, bright red spots covered them and I could not even shave them, spotty and hairy! There was no way I was going to wear a skirt to allow air to get to them. I was even paranoid of sitting in my garden..... I just felt sooo bad. Anyway, that was my low stage and after that I just carried on and blanked it all out really. I didnt take anything, go for light therapy or even put moisturising cream on. The funny thing is about six weeks ago I noticed the spots just disappeared!!!! Ive got the odd mark of an old spot and thats it.  It feels really weird writing this...I still cant really believe it.  My baby boy is now six months old and its been exactly a year since I got PLC. The only place I didnt get the spots was my face though I did get some around the eye. Now nothing! Anyway, I thought I must come on and give others hope as it does get a bit depressing when some people have had it for years. They always said they didnt know the cause and Im wondering now if thats because the cause is different for everyone. For me, I personally think it was hormonal, something was triggered by the pregnancy but hey thats just my own personal opionion! I really do hope and think that the little ones who have it will be plc free at puberty! Funny but my derm was right, he said around a year on my first visit. Ive really gone on now...sorry! Good luck to u all and I will let you know if it comes back.  ;D

I know how you feel. I would wear long pants and long sleeved shirts in the summer and everyone would come up and ask if I was hot but I'd act it out and just say I'm fine. Even though I'm sweating from every gland in my body. I also didn't get any on my face, a few were flaring up on my neck, and when those on my neck started to disappear so did the rest. I think it was from the tetracycline but maybe it might have just had it's time and went like yours did. I'm glad yours has cleared up and the weird thing is, the spots that are still left over, I went to a different dermatologist and he looks at them and says they're moles. :S I also have a scar thing which he doesn't know what it is.

Regards,
PLC4ME
Title: Re: Pityriasis Lichenoides Chronica
Post by: mlucaj on Friday December 08, 2006, 03:31:10 PM
Hi everyone.  I was diagnosed with pleva a couple weeks ago.  I am a male 32 years old.  I first noticed a few small bumps on the insides of my arms about 4-6 weeks ago.  My dermatologist gave me a bunch of drugs and steroid creams to "try" and if they didnt do much he said he would prescribe others.   I wasn't happy with his answers so thats how I found this group and why I chose to seek "alternative" treatment.
In the meantime I went to a couple of homeopathic doctors and I was told I have a slow or toxic liver.  Their explanation was there are 3 ways to get rid of toxins in your body (2 of them involving the bathroom) and the 3rd is through your skin.  When the body can't process the toxins fast enough for whatever reason, they get into the blood and in many cases come out through the skin.
I got off the tetracycline and the topical steroids and am doing a liver detox and will be detoxing the rest of my body kind of like  EX-ITCHELL did.  I will keep everyone posted on whether this works for me
Good luck to you all
Title: Re: Pityriasis Lichenoides Chronica
Post by: ddan on Sunday December 10, 2006, 06:31:42 PM
i was diagnosed with plc when i was 20. i am now 26. does anyone know if theres a way to get rid of those light faded spots? i've been lucky to not have any severe problems. i get a spot here,,, a spot there,,, very rarely do i get a lot in one area. but i've accumulated a lot of these faded spots everywhere, mostly on my thighs and stomach, trunk, and it's kind of annoying. i almost never itch, except occasionally on my back, but the itching is underneath the skin. i have so many acne scars on my back that its hard to tell the difference between the acne and what may be plc. i've heard people say that sunlight helps get rid of the plc, which sounded weird to me, because i was a homeless street person when i first got plc. i was in the sunlight 24/7, and never bathed or even showered.
Title: Re: Pityriasis Lichenoides Chronica
Post by: dianaturin on Tuesday December 12, 2006, 09:50:19 PM
Hi,
Please let us know what works. I am 40 and was diagnosed about 3 months ago. It seems we are left on our own to figure out how to deal with this. I was also thinking about doing a detox. Not sure how to go about it. If you have any suggestions that would be great. I have them all over my body, including my face and neck.
Thanks
Diana
Title: Re: Pityriasis Lichenoides Chronica
Post by: dianaturin on Tuesday December 12, 2006, 09:57:04 PM
Greetings Again!  :hi:

Thank you for your words of encouragement, Jahanara. I am located just south of Richmond, so I do get plenty of sun here -- I should say plenty of bearable sun here. There's been a nasty cold front lingering just to the west of us, sliding east and west, just enough to bring storms and sun hour by hour. I suppose it's OK since I burned myself yesterday and need some time before going out and doing it again! I'm a firm believer in the power of the sunlight and it's control over PLC. This time last year I was a mess, covered with oozing pustules that were literally driving me crazy! After spending three months with my primary care doctor who didn't know what do do, I was finally able to get into a dermatologist who diagnosed me instantly and had me on the road to wellness. I can't tell you what a nightmare it was to be covered with PLC and have no means of relief from the itch and sores. I had staff infections several times during the months before I finally had the 'disorder' under control.

The dermatologist gave me creams to help with the itch, which only made them worse because they were too heavy and robbed the skin of air. I've learned that only water-based creams work on PLC skin now. Finally, she had me use her 'Narrow-band UVB light box' 5 days a week, $20 a day and a round trip drive of 90 miles. As the cost of gas kept increasing, the cost of her treatments continued to get more and more expensive. Her nurse told me to ask her about a tanning booth. I did and she approved it (but not a tanning bed where you lay in someone elses's 'juices') so now I spend $25 a month and use a tanning booth for as long and often as I want, getting the same results as I was in her expensive booth. I still see my dermatologist 4 times a year, so I haven't given up with the experts.

During my 6 months of agony before the PLC was under control, I discovered there were certain types of creams and oils, cleaning 'rituals' and clothing that worked best for my condition. I'd be most happy to share them with you if you'd like to privately message me.

Knowing the pain and discomfort, public shame, and personal dismay I endured with my bouts of PLC, I can only say that my heart goes out to those children who have to endure the same. I'm sure you saw my earlier post when I 'spouted' to those who are waiting for puberty to cure their children's malady. I first encountered PLC at the age of 49. There are many different disorders that stump doctors and leave them with no choice but to attribute them to childhood and mark puberty as the turning point of the disorder's change. We have learned that is no longer the case.

Sunlight can be dangerous if not monitored, but in cases such as ours -- us with PLC -- it can be a blessing. You can use sunscreen and you can still monitor the time of sun that is received. But, look at your child and ask which is worse? As someone who suffers from the awful effects of PLC, I can tell you that a small bit of sun each day (my doctor told my that 5 minutes a day is all it takes) is more than worth the pain and suffering from PLC.

Have a blessed day!

elseaeff
Title: Re: Pityriasis Lichenoides Chronica
Post by: mlucaj on Monday January 08, 2007, 09:57:09 PM
Hello again everyone, just wanted to give an update on my pleva.   I was diagnosed in November and decided to go the natural route since my dermatologist could not tell me much about this.  I went to a naturopath and was told I have a slow liver so she told me what I should do. I did a 1 day liver cleanse, took some vitamins and milk thistle (helps with various liver problems) and also did something called jmt technique (recommended by a friend)which is supposed to clean your body on a cellular level (this still seems real hokey pokey but hey I was desperate) and went to a tanning booth 3 times for 5 minutes each time
Well, the hundreds of red bumps I had all over are GONE.  I dont know which one of the above 3 things I did worked, or even if they went away on their own but I know the dermatologist didnt work.  He wanted me to take anti biotics for 3 months and apply a steroid cream all over in hopes that it would help but I didn not do it.  I would recommend to anyone on here to check into natural healing for this skin disorder, it won't hurt.
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Friday January 12, 2007, 07:01:00 AM
Hello again everyone, just wanted to give an update on my pleva.   I was diagnosed in November and decided to go the natural route since my dermatologist could not tell me much about this.  I went to a naturopath and was told I have a slow liver so she told me what I should do. I did a 1 day liver cleanse, took some vitamins and milk thistle (helps with various liver problems) and also did something called jmt technique (recommended by a friend)which is supposed to clean your body on a cellular level (this still seems real hokey pokey but hey I was desperate) and went to a tanning booth 3 times for 5 minutes each time
Well, the hundreds of red bumps I had all over are GONE.  I dont know which one of the above 3 things I did worked, or even if they went away on their own but I know the dermatologist didnt work.  He wanted me to take anti biotics for 3 months and apply a steroid cream all over in hopes that it would help but I didn not do it.  I would recommend to anyone on here to check into natural healing for this skin disorder, it won't hurt.

That's such great news! I'm so happy for you. Maybe this would work for PLC aswell. Are Pleva and PLC similar? I hope your skin stays clear. Keep us updated.

Thanks,
PLC4ME
Title: Re: Pityriasis Lichenoides Chronica
Post by: EX-itchell on Wednesday January 17, 2007, 01:20:10 PM
Hi all,

Just an update on plc.

Since the New Year when I drank lots of great wine, and ate really well, I've started to get that itchy feeling......

So I'm on a detox, cutting out alcohol and meat again.  The itching is retreating, but this is just a warning, that even when you THINK you're ok.....

Good luck to all those struggling with the spots.  Just one thought about fading spots.  What I DID do to get rid of mine, was to massage myself vigorously on all the areas which were covered on a daily basis, using sesame oil.  I wonder if that might have helped?

EX-itchell
Title: Re: Pityriasis Lichenoides Chronica
Post by: Loveysmommy on Sunday January 21, 2007, 03:37:57 PM
Hello everyone,

My daughter has not been officially diagnosed yet, as I only just learned about PLEVA a few weeks ago.  My daughter, who is now 10, has had these "mysterious" recurring red spots since she was 3 yrs. old.  We've been to every kind of doctor (pediatrician, dermatologist, allergist, etc....) and no one has ever seen it or knows what it is.  Cultures have come back negative and we have had her immune system checked (everything was normal).

Well, at her last well-care visit - we made an appointment with a new doctor and as I have for the last 7 years... anytime we come in contact with a new doctor I have them look at her spots "just in case" I get lucky and someone will say "OH, I know what that is" - Yea, never happens!!  WELL, this time the doctor said "hmm.... has anyone ever mentioned PLEVA to you?"   Well, I looked it up online and when I saw the description and pictures of it I nearly wet my pants!! 

I have yet to have her officially diagnosed (the spots cleared up before we could get to the doctor.  I'll have to make a new appt. as soon as the new batch shows up!)

This has been a really difficult battle for the last seven years.  Seeing my sweet little angel covered in the angry red sores really cuts through my heart.  At first, I wasn't sure that PLEVA was it because the initial pictures I saw didn't look like her "sores".  Hers are dime size and red and have open middles.  But then, I saw someone's pictures that they posted and I said "OMG, that's it!! That's what my daughter has!!"  As she got older, moreso now, the spots look much angrier - redder - and with huge wide open centers (gaping holes, I call them).  I slather neosporin on them to keep away infection and have the poor child covered in band-aids constantly.  Keeping her from scratching them as they heal (that's when they get itchy) has been a real battle, not to mention the constant comments she gets at school (why do you have so many boo-boos?  etc....)

She used to get them all over her little face as a little child, but as she got older, they shifted.  Now she rarely gets them on her face but gets them in fierce "batches" on her arms, butt, upper thighs/hips, and legs.  She hasn't had any on her trunk or back yet.

She has handled them quite well over the years and other than the itching, I don't think they cause her too much discomfort, thank goodness.

I wish there was something to make them heal up faster, but nothing we have tried makes any difference.  I just try to keep them covered so she doesn't scratch them.

Thanks for "listening" to my long post.  I'm amazed to finally find people who can relate to what we have been going through for so many years.  It's like a whole new world opened up for us!!

Thanks for sharing your stories.  I will be extremely shocked if she does not test positive for PLEVA, I mean - if not this what the heck else could it be??!!!

Have a great day!

Loveysmommy
Title: Re: Pityriasis Lichenoides Chronica
Post by: EX-itchell on Monday January 22, 2007, 09:02:28 AM
Hello and welcome to Skincell,

I'm really glad you recognise her spots.  Lots of people have biopsies that do NOT come back positive so don't worry about that at all.  If the derm thinks pleva is likely, then that's probably what your poor daughter has.

Do read everything you can about it on the boards, and you should get lots of tips.  I'm a plc sufferer: this is a disease similar to pleva.  So here are a few tips:

keep your daughter cool.  Getting hot makes the condition worse.  I wear only pure cotton next to my skin, and try to keep a bit cool, rather than snug, even at night when my body's tendency is to get hot.  When you get hot your skin itches, you scratch, and get more spots!

Consider your daughter's diet.  Have you looked at this aspect at all?  Keep off fizzy drinks.  Let me know if you have questions in this area.

And above all, ask questions of the other sufferers about ANYTHING and we'll all try to help.

 :hugs:

EX-itchell
Title: Re: Pityriasis Lichenoides Chronica
Post by: dianaturin on Tuesday January 23, 2007, 10:01:41 PM
Hi Loveysmommy,

I too am a PLC sufferer. One thing I have tried recently is Aveeno body was and cream moisterizer for dry, itchy skin. I've tried all types of creams and lotions and this seems to work really great for the itchies. Mine is going away but I still get itchy and some small spots. Do as ex-itchell suggested, which is to massage the lotion in real good. It really helps. Also, I take black currant oil, fish oil, and primrose oil, all the stuff that is good for the skin. Turmeric is good for swelling. You may want to look into these. I was on Prednisone for a awhile but I can happily say I don't have to use it anymore. Steroid creams and thin the skin. Good luck. Don't feel bad. I went to tons of doctors before they figured out what I had.
Diana.t.
Title: Re: Pityriasis Lichenoides Chronica
Post by: dianaturin on Tuesday January 23, 2007, 10:06:06 PM
Hi,
Left you a message on the PLC page. Let me know if it helps.
Dianat
Title: Re: Pityriasis Lichenoides Chronica
Post by: MattyS on Tuesday April 03, 2007, 05:45:17 PM
hello people. i was diagnosed with PLC following a biopsy about 4 years ago now (when i was 18). it's not really shown any signs of dissapearing and i'd say its worse now than it was originally. my spots are predominantly present in blotchy areas on my skin, a much smaller percentage come to the surface and manifest as darker red spots. the affected area is pretty much my entire torso and trunk/upper legs. there aren't really any side effects and i wouldn't say it itches really. i've learned to live with it but recently i've been thinking why should i if there are possible treatments which could improve the condition, it looks really unsightly :(

the derm that diagnosed me wasn't very helpful and didn't really offer any treatment just that it should fade in time, with the worst case scenario being a few years of suffering...

i've tried various moisturisers etc etc and all that stuff to ease the dry skin but after reading the thread it seems like sunlight is a real option for self-treatment of the condition. i haven't really exposed my body to any sunlight since i contracted the condition and i have very pale skin, i've been very busy and been away to uni etc...interestingly, the upper side of my forearm and upper side of my upper arm/shoulder seem to be free from lesions, both areas which have had a lot more sunlight on them than the other areas of my body in recent years. this year im gonna try and catch as much sun as is safely possible all over my body and see if that has an effect.

from reading the rest of the thread it seems that sunlight can aggravate the condition and i have memories of this happening when i was on holiday soon after being diagnosed. however, perhaps persisting a bit more will start to yeild positive results. can anyone offer any insight into this or alternatively is there anyone else living in the uk who suffers with the condition who has seen useful dermatologists/had effective treatment. i'm really interested in people who are longer term sufferers like myself for advice. i'm ready to do whatever i possibly can to help improve the condition at the moment...

Matt.
Title: Re: Pityriasis Lichenoides Chronica
Post by: 2girls on Thursday April 05, 2007, 04:58:52 PM
Hello All.  Ive never posted on a message board, so bear with me.

My daughter (4yrs) was diagnosed about a month ago with PLC.  She is broken out in red spots from her neck to her toes.  She has been taking erythromycen (ERYPed 200) 3 times a day for about a month and started narrow broadband UVB light box treatments about 3 weeks ago (has had 9 treatments so far).  Her worst spots are on her torso, hips, arms, and legs, ranging in size from a fingernail to a thumbprint. Many of the sports seem to "run together", making what look to be much larger sections of sensitive, raw, brownish-colored skin.  She also has started having extremely, dry, peeling skin, particularly around her legs, hips, ears and scalp.   
It breaks my heart that she is having to go thru this.

While I know that each case is different, when should I expect to see some improvement from these light treatments?  I do think that she hasnt gotten any worse over the last month, but she certianly hasnt improved very much. The doctors office believe that she should be "pretty clear" in about 6-8 more weeks.  Does that sound accurate?

She is also extremely itchy (constantly scratching).  I have tried atopiclair, tricimilone, cetaphil, eucerin, and 2.5% hydrocortisone cream with only limited results. 

On a side note, her sister (8 yrs) had PLEVA at the age of 4, and cleared up beautifully with a 3 month course of erythomycen.  She has not had a flare up since (knock on wood).

I look forward to hearing what you have to say.  I am willing to try just about anything to help her. 

Thanks again,

2girls
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Thursday April 05, 2007, 09:48:53 PM
I am sorry about your daughter.  My daughter (she'll be 9 this summer) developed PLC right before she turned 2.  I have never had UV treatment (in a light box), but in the summer, we do do "ambient light" (i.e. regular sunlight) which improves it over time quite alot.  I know what you mean about them running together, and forming one big blotch.  I also have noticed alot of dryness on my daughter's ear lobes (I use hydrocortizone or regular moisturizer sometimes).  Also, even where she doesn't have PLC, there is still a general flakiness dryness, particularly in winter, but it doesn't cause her much physical discomfort.  She also gets the occassional smaller spots around her chin/mouth area, but they seem to be more discreet, probably because she is always having her face exposed.  Also, she has a tendency to get slightly dry below the eyebrow area, and to a lesser extent around the nostrils (more in winter).  I do a OTC hydro occassionally for the eyebrow area, but if it is not too flakey, I leave it.  Trunk/bottom area is the worst.  Also, upper arms/upper legs are worse.  But spots are present on lower arms/lower legs and back/belly, but not as bad.  Front of arms and back of arms (if you were wearing a "bra", it would be where the straps are, but just near the armpit area) are noticeable.  Obviously, she is too young for a bra, so this PLC is not from chaffing.  Just regular PLC.  Docs told me that this distribution is typical.  I get a little down about it.  I am told that the prognosis is variable, but the vast majority (I have heard anywhere from 80-95%) do clear up, but it can take til puberty!  We are coming up on seven years soon. 

I am surprised that both your children have had a run in with this horrible skin condition.  Was your other child's PLEVA biopsy-diagnosed?  What about your daughter's PLC - how did they diagnose that?  The good thing about getting it so young is that my daughter doesn't really know any different.  What did your docs say about it?  Will it really go away? I keep asking myself this, and am trying to stay positive...
Title: Re: Pityriasis Lichenoides Chronica
Post by: 2girls on Friday April 06, 2007, 03:21:29 AM
Thank you for your kind word.  To answer your questions, both girls were diagnosed with a biopsy.  After the current dermatologist found out about my other daughters PLEVA, she told me that she thinks that there was a "genetic phenotype that was triggered by a virus".   My older daughter doesnt remember her spots and I am very grateful for that.  Her only lasting affects are a small scar from the skin biopsy.  I hope that my younger ones go away just as smoothly and will eventually be a distant memory.

My daughters doctors say that she is responding well to the light box so far.  Because I look at it so closely all the time, it is more difficult for me to notice any little changes.  I do think that her back looks better, and things look less "angry" overall.  Im hoping that we will begin to see more significant results soon.  The idea of her having to deal with these types of spots long term is very upsetting for me.

On the up side, I tried using pure vaseline petroleum jelly on her this evening (a tip from this forum) and she looked a bit better and less red on the area that we applied it to.  I put it all over her body tonite and are hoping to see something in the morning.  I will post then and let you know if it helped. 

I am very grateful for finding this forum.  Its wonderful to be able to discuss this with condition with.  Thanks again.

2girls
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Friday April 06, 2007, 01:55:27 PM
Does your distribution/dryness of PLC sound similar to my daughters?  Particularly near armpits (on sides), dryness on lobes/ears, upper legs, upper arms, trunk/bottom, and more discreete few spots around chin?
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Friday April 06, 2007, 02:18:10 PM
For all PL sufferers!  I found this interesting article on the web that was just published.  I also emailed the derm who was one of the researchers.  It was encouraging, and interesting, because they studied 124 children with PLC/PLEVA diagnosis'.  here is the main information, quoted verbatim from the report, but I abridged some of it.

Pityriasis lichenoides in childhool:  a retrospective review of 124 patients. 

Paller, AS and about 5 other doctors listed
Dept. of Dermatology, Northwestern University Feinberg School of Med. Chicago (paper published Feb '07).

BACKGROUND:  Pityriasis lichenoides (PL) occurs in all age groups, although predominantly in younger age groups.  OBJECTIVE:  We sought to study the clinical features of PL in children followed up at our institution.  METHOD:  The records of 124 children who were given the diagnosis of PL at our institution between 1993 and 2003 were retrospectively reviewed.  RESULTS:  PL chronica was recorded in 37% of the cases.  PLEVA was recorded in 57% of the cases.  Clinical features of both disorders were seen simultaneously in the remaining.  The median age of onset was 60 months.  The age distribution showed peaks at 2-3 years and 5-7 years.  The median duration was 20 months (range 3-132 months) in patients with PLC and 18 months (range 4-108 months) in patients with PLEVA.  Of the patients, 59% had pruritus, whereas 32% reported no symptoms.  Erythromycin was administered to 79% of the affected children.  66% of these showed a partial response.  CONCLUSIONS:  PL is not an uncommon disease in childhood, with age peaks in preschool and the early school-age years. It is usually recurrent, and shows a seasonal variation with onset most often in fall or winter.  In childhool PL, erythromycin is an effective initial treatment of choice.  End of article..


I was most interested in the duration,  which can be anywhere from 3 to 132 months!  (This skin condition can take as long as 11 years??).  I emailed Paller at Feinberg School of Med, and asked her a couple of questions.  (She was very responsive).  I asked her if puberty has anything to do with helping clear up the condition.  She told me that she thought puberty was just a coincidence, and that since most children got it young, puberty was when they had had the condition for 10 or more years, and that it was simply duration that caused it to burn out.  I also asked her, of all the child patients, approximately what percentage do clear.  She said that she has a clearance rate of 95%.  (Encouraging!).  She told me that she personally has a patient who has had PL for nine years, but hopefully will remit in the next year to two.  She said the prognosis (as far as duration of disease) is very variable, which makes it difficult to predict.  Some of the lucky ones will clear up after less than a year, but others grumble along for years. 


   
Title: Re: Pityriasis Lichenoides Chronica
Post by: 2girls on Friday April 06, 2007, 04:38:00 PM
Jahan,

The distribution of her spots started as being limited to her torso only (originally diagnosed visually as Pityriasis Rosea), and eventually spread to her lower legs an feet, her hips (this is the worst area), her lower arms/hands, and her neck. They havent really creeped onto her face much.  However, her ears, behind her ears and neck, forehead and around her eyes are very dry and peely.  Her feet also get really dry and crack.  She doesnt have many spots on her shoulders and underarms (like your daughter does), but she does have a few dry spots there also. 

Vaseline update:  While she still has spots, they did look less angry this morning after we lathered her with the vaseline last nite.  It did significantly help with itching and comfort level.  Last night was the the first night she hadnt woken up in almost 2 weeks complaining of itching!  To me, that is an improvement. 

2girls
Title: Re: Pityriasis Lichenoides Chronica
Post by: galpal on Tuesday April 10, 2007, 10:12:02 PM
Hello,

I was very interested to read your posts.  My daughter (almost 7) was recently diagnosed with PLEVA.  She is doing the 60 day Erythmicin.  There is very little sun here in Massachusetts so that has not been an option until Spring really arrives.  She first showed spots in Dec. and it was diagnosed in March.  We thought it was the chicken pox, scabies, staph, etc. 
She is looking better.  At one point, she had about 100 angry looking lesions all over her body including small ones on her face.  She now has just a few bad ones, and many little ones on her arms and legs.  Her torso has cleared.  The red scars left behind are too many to count but I know they will fade in time.
She is taking cod liver oil (really vile) every day.  Lots of vitamins and probiotics to protect from the long term antibiotic use.
Although not recommended by her Doc, I put adult strength cortizone on any that seem to be starting on her face.  I use it the first time I notice it and it seems to stop the progress.  The others on her face left a pox scar and that seems a lot worse than the cream. 
It has been four months and I'm starting to think the end might be near. 

No matter what I put in her baths (sea salt, oatmeal), she looks so bad after the baths.  I'm going to check this with her derm.  Does this mean that the baths are good or bad?

How did the vaseline work?  Any other remedies?

Let me know if I can help.

Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Wednesday April 11, 2007, 03:16:32 PM
Hi GalPal,
We came from Massachusetts (we live in sunny FL now, which is better for PLC/PLEVA.  Did you read my article above?  It has interesting info on duration, etc..?  If you dont mind me asking, who is your derm?  I used to see annually Dr. Gellis at Boston Children's, who was wonderful, and had seen quite a bit of PLC/PLEVA, because he'd practiced for a while.  What did your doc say about prognosis?  PLC was not responsive to erythromycin for me.  A little natural sun is what we do, even when we were in Mass, in the summer especially. 
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Wednesday April 11, 2007, 03:21:17 PM
Oh, I forgot to add to your other questions.  Baths/showers, I have the same problem.  The temperature (heat) seems to make them more inflamed.  We do showers at night, and she is settled down the next morning.  But still, the spots are always pink and always there.  Will it ever end?  I know it will, I must stay positive.  I just wish I knew when.  Petroleum/vaseline is what we use.  Other moisturizers etc.. seem to sting her.  It seems she is also sensitive to lanolin.  Her skin is generally on the dry side, with the PLC, and gets flakey, even in areas where she is not actively spotty.  Where are yours the worst? Do you think the improvement is from the erythro, or have you been starting to let her out in natural sun? (A little early, I remember Mass).  How is the distribution>  Mine gets little spots on face, around chin/lower cheek area, and occassionally around side of eye, but they are always smaller and more discreet; perhaps because her face is always exposed to sun/elements. 
Title: Re: Pityriasis Lichenoides Chronica
Post by: 2girls on Wednesday April 11, 2007, 03:48:11 PM
I agree about baths.  They do make the spots more inflamed.  When I asked my derm about this, they said it was normal and not much could be done for it.
in regards to the erythro, we just started our second month of it.  when my older daughter did 3 months of it for PLEVA, it cleared her up beautifully.  I hope to have similar results with my younger one and her PLC.  We are currently combining the erythro with 2 treatments per week of UVB narrow broadband lightbox treatments to help her spots.  Because we live in NW Illinois (where it is currently snowing  ::)), we havent been able to get any other sunlight.  my derm said that we should see her pretty clear by the end of may (i hope they are right).  I have noticed her arms are lighter and we havent had any new spots in the last couple of weeks.  Hopefully this is a sign of improvement. 
Galpal, what kind of vitamins and probiotics are you using to help protect against the long term antibiotic use?  This is something that does concern me...

2girls
Title: Re: Pityriasis Lichenoides Chronica
Post by: galpal on Thursday April 12, 2007, 06:03:54 PM
Hi Jahan and 2girls,

I am so confused by this condition.  We don't know how long or if it will come back again and again.  Hopefully, when it is gone then it is gone.  My

I tried to get her in with Dr. Gellis but it was too long a wait.  Dr. Gellis recommended Dr. Sidbury with Children's but we still have to wait til June. I'll let you know if there is any new insight.   My local derm seems to be following protocol. It has been almost a month on the Eryth and things are looking better.  She has gone from having upwards of 50 on each leg.  Some of them were nickel sized lesions and have left nasty scarring.  Now she only has a few bad ones and numerous little ones.  She had fewer on her torso (but they were all big) and they are gone with the red scars left behind.  Her arms have a few small ones.  She has none on her face right now.  She had some on her nose/chin but they have fallen off and left pox marks.

We've had little sun so that has not been a factor.  I just use regular vitamins.  I give her cod liver oil that is purified (no contaminants-from Omegabrite but there is lots out there) every day.  We use Aveeno to wash.  I've switched to sensitive skin laundry detergents.  She is a picky eater but she is drinking lots of grape juice, eating bowls of blueberries.  Anything high in anti-oxidants.  Since this seems to be a malfunction of the skin's immune system (I had read that Northwestern study, also) I'm just trying to build her up. 

I don't know what is working but I would try anything that is not harmful.  We may have to use the UVB as the next step but I'm now thinking it may not be necessary.  I am staying positive for her.  I tell her it is my job to take care of the spots and her job to have fun and keep smiling.  Everyday I say they look better whether they do or not.  She did quit dance because of some comments that were made but that has been the only incident.  We're still pretty covered up here in Boston so I'm not looking forward to shorts/bathing suits with all the scars but I guess the upside is that it will mean more sun!  My daughter is sooooo fair.  Freckles and burns so we'll limit the sun to late day.  Hopefully, it will help.

I do hope you continue to see improvements.  It was only three weeks into treatments that I started to feel hopeful.  My derm uses the term "remission" but I don't want to think about it recurring yet.

Let's try to help our daughters be happy and well-adjusted in the meantime!  This just stinks for them so they need lots of reassurance.


   

Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Thursday April 12, 2007, 07:59:50 PM
Yes.  That first appt with Dr. Gellis is difficult to get, months to wait.  But once you are in, it is so much easier and quicker to get future appts.  Try to get to Gellis if you can.  He's great.  I miss him, because he was so reassuring.  He cautioned against light therapy, since she was so young, risk of skin cancer, etc.., but she has PLC, which, although lesions are extensive, etc.., they are not pussy, necrotic, or itchy or scabby.  Please post here, when you finally do get a doc. In Florida, I don't really have any docs like I did with Gellis; not that they could really do too much, other than wait it out.  I live in East Central coast, and Miami or Jacksonville is three hours away.  But I feel that unless there is some major breakthrough, there is nothing I can do other than wait, get ambient sun, and hope.  Erythro did not help my daughter.  Best to you all. 
Title: Re: Pityriasis Lichenoides Chronica
Post by: 2girls on Monday April 16, 2007, 09:35:29 PM
I waited all weekend to post this, as I was too upset.  My daughter (4) has had some new developments in the treatment of her PLC.

I took her for 2 UVB light box treatments last week.  A day or so after the first one (Monday), I noticed some irregular marks on her chest.  They looked like PLC spots, but with white centers and bright red edges.  When we went if for her next treatment (Friday), I showed them to the technician (not her regular one, but she claimed to be trained in the equipment), who said that we would have the doctor look at it at her next treatment.  After her Friday treatment, she was sore, but I was warned this would be typical. 

24 hours after that treatment, she broke out in blisters the size of thumb prints on her chest.  She had been burned. 

We have now suspended all light treatments (duh) and are in wound care management for the burns.  We soak them with compresses and apply steroid creams.  We also have an appointment with a pediatric dermatologist at Children's Memorial in Chicago next week. 

I post this to warn others to seriously consider the potential side affects of this treatment before proceeding with it, especially with children.  The heartbreak of having my child have to suffer because of this treatment has been agonizing for me and my family.  I am angry and frustrated.  Please, seriously think before doing this treatment. In my opinion, it just isn't worth it.

Thank you all for letting me vent.  I will keep you posted on her progress. 

2girls

UPDATE 5-7-07:  It has been about 3 weeks since my daughter was burned by UVB therapy.  Her burns healed very well and any scarring should be minimal.  She bounced back very well, considering all that she has been through. 
About a week ago we had an appointment with a ped. derm. at Children's Memorial in Chicago.  He looked her over and changed her meds, and wanted to re-examine her pathology slides from her previous derm..  He thought that there may be something different going on, and it turns out, he was right.  She has an autoimmune condition called lichen planus http://familydoctor.org/online/famdocen/home/common/skin/disorders/600.html.  SHE NEVER HAD PLC.
As frustrating as this has been, i am confident that she is now being treated properly (topical fluocinolone and topical fluocinolone LCD).  She is already showing signs of improvement on her arms and chest. 
Good luck to all of those dealing with PLC.  I hope that you will soon find relief. 

2girls
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Tuesday April 17, 2007, 07:57:42 PM
I am so sorry about your daughter.  This is terrible that the poor thing has this horrible burn.  You think that with light treatments, they would be more careful.  We used to live in Boston and even there, my doc (Gellis) cautioned against light box treatments with her being so young.  He said if she were an adult, she would probably tolerate it better.  He suggested only ambient sun exposure, and I always noticed an improvement from April onwards (lasted til October).  But with the climate so cold, she was covered up more in winter, PLC spots were not as noticeable, say, at school.  I know she will get better; but as a mother, I know this is as bad for you as it is for her.  Keep us posted.   
Title: Re: Pityriasis Lichenoides Chronica
Post by: galpal on Wednesday April 18, 2007, 10:47:11 PM
I am so sorry to hear about your daughter.  This is a horrible development and I thank you so much for the warning.  My derm talked about UVB treatment but was reluctant.  I was going to pursue it since we have had no sun but now I won't.

Give her lots of tlc and know that she will heal.  If it makes you feel better about long term damage, I used a tanning salon when I was 14 and had first degree burns/blisters all over my body.  I have my skin checked annually but at 45 I still have no bad biopsies. 

I hope she is on the mend.  Keep us posted!

Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Monday April 30, 2007, 08:40:39 PM
Hi Everyone!

My daughter (PLC-er) was out yesterday, for the afternoon (3 hours) swimming at a friend's pool; this is the first time in months she has gone swimming.  There was quite alot of sun - although I put sunblock on her.  In general, the sun improves my daughter's PLC.  However, the next day (today), after all that sun, her PLC looks worse - more angry and redder.  This was her first major sun exposure episode this year.  It also seems that the chlorine dried her out (although she did shower off).  I should have moisturized her after she showered off.  Do any of you have this initial PLC reaction to sun, before it starts clearing up again?  She hasn't been swimming since last summer, so it has been a while.  Same thing with the shower.  Whenever she gets into a hot shower, it flares it up.  I am hoping her PLC will calm down in the next day or two, since it is looking pretty red and irritated from yesterday's sunny afternoon.

Hope all is well with everyone!

Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Monday April 30, 2007, 10:24:03 PM
Dear Jahan:

I have mentioned before that my doctor, while recommending ambient sunlight, recommends the tolerance be built up slowly, startling by just 2 minutes a day and progressing to no more than 5 minutes a day. More than 5 minutes a day can cause severe sun damage to the skin.

Also, showers should always be lukewarm (even the hot showers feel so good) because the hot showers clear all of the natural and store-bought moisturizers from her skin. After the shower, before the skin dries, I rub baby oil or lavender oil or the such to hold the moisture into the skin. Shortly therafter I rub a water- based (very light) cream into the skin to hold the oil in and complete the moisturizing circle.

Never allow her to be without moisturizers! Never put a "heavy' moisturizer on her. My derm has given me an ointment called fluocinonide 0.05% which is the first thing I put on after a shower, followed by The BodyShop's Hemp Cream that is also used at Medical College of VA's burn unit. I cant' tell you how wonderful that feels.

Also while showering, I use a pair of gloves that are made for showering and are rough, for exfoilating the skin. This not only feels like heaven, but it loosens and removes all dead skin that hangs on her, causing more itch.

Good luck to you and your daughter. After more than 2 years with PLC I have had to learn by trial and error what works and this is what works for me.

Regards,
Linda :)
Title: Re: Pityriasis Lichenoides Chronica
Post by: Angela7 on Saturday June 02, 2007, 04:15:30 AM
Hi J - haven't checked here in a while but it's that time of the year - my now almost 8 year old has to hit the beach with spots as he has had to do for the last 5 years.  Our kids' PLC has always had so much in common - my son's spots always look redder and angrier after initial sun exposure but it also helps so much in the long run.  And my son didn't respond to Erythro after the first initial treatment with it.  Like you, I do very little now, sunlight, moisturize and wait.  It has definately improved over time - his outbreaks seem less intense and he is so used to it that he barely notices them.  Hope you are well and take care!   
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Wednesday June 06, 2007, 11:53:28 PM
Hi Angela, always nice to hear from you.  Summer is upon us, my daughter will be 9.  It is nice to see some summer sun improving after the winter.  (Despite being in FL, there is still a pretty major flareup throughout the winter months).  Do you still go annually for a checkup for your son?  Do they still say the same thing?  Did you read that study I posted a few weeks back about a retrospective study of PLC/PLEVA kids (they surveyed 124).  It was interesting.  I noticed the duration for the condition was as little as a few months til as long as 11 years for resolution!  I hope it will happen, and try to keep optimistic; but it is discouraging, don't you find? My daughter, getting older, is sometimes becoming more self conscious, esp. in the winter months, because here, in FL, since winter is warm, you still wear the short sleeves etc.. but the UV index becomes quite low, and she always gets the PLC more extensively (particularly on upper legs/arms, esp. on back of legs/trunck.  I am going to bring her to the derm for her annual check, although it is all the same, I feel, esp. when the derm doesn't really see PLC/PLEVA.  (I miss Boston doctors!).  Does your derm really have alot of PLEVA/PLC kids?  Are they really optimistic?  Thanks for the insight,

J
Title: Re: Pityriasis Lichenoides Chronica
Post by: alphaqforever247 on Friday June 15, 2007, 03:20:35 AM
hello everybody my name is norman i am 24 now.  i have posted in this site back in 04 when i was first DX with pleva.  Since then thigs have been good though there has never been a time where ive been 100 percent pleva free i always have a spot here and there.  Though for the past month its getting bad again to the point where i dont want to take my shirt off at the beach.  It has never been this bad only when i first got DX with it.  I would think during the summer time it would get better because of the more sun exposure but it seems like its getting worst.  i am not alergic to ne thing.  Ive never really had ne health problems till i got dx with pleva a month later i get dx with excema.  should i go back to my meds erythromyocin, and lay out in the sun everyday???
Title: Re: Pityriasis Lichenoides Chronica
Post by: Charlotte Marie on Monday June 18, 2007, 12:42:27 AM
I am a 67 year old white female who has been dealing with pityriasis lichenoides chronica now for 6 years...I have never had less than a hundred spots on me...most of mine are on my legs and arms but have occasionally had a few on my ear and jawline and my neck...I too have run the gammut with the dermatologist taking antibiotics and prednisone and none of it helped...I have had more success using fresh aloe vera gel with really does seem to help the spots heal faster but doesn't by any means keep me from breaking out and I have definitely noticed that anything going on in my life that causes me to be upset DEFINITELY causes me to break out much more so I do believe that nerves play a big part in this even though the doctors have told me that it doesn't...are there any other senior citizens out there dealing with this disease?...I feel like such a leper...living in Texas it is really hard in the summer time wearing long pants and long sleeves but I look so awful I just can't wear shorts or short sleeves.
Title: Re: Pityriasis Lichenoides Chronica
Post by: Angela7 on Monday June 18, 2007, 01:54:44 PM
So sorry to hear of your suffering.  As a mom of an almost 8 year old PLC kid (he has had it for 6 years) I sure can relate to how hard it must be for you.  I can only attest to the wonders of the sun for him.  He too is covered again after the NE winter and spring and even just a few days of some sun exposure have helped.  The spots looker redder and angrier at first but dry up pretty quickly.  For adults I have also heard that some people were having success with the anti-viral herpes medication Acyclovir - perhaps you can discuss it with your derm.  My derm was not willing to okay it for my son due to his age but it is a widely used and supposedly safe medication.  As always, we can usually take a cue from kids on the right way to live - he hangs out happily at the beach, covered with spots, not noticing that others are staring at his chest and back because he is just too happy playing in the sand and waves.  But even after all this time with PLC I still have to remind my own extended family not to talk about his spots in front of him.  I usually let him get 15 minutes of sun B4 putting sunscreen on him and it is already helping.

Jahan - I must confess I haven't taken him for a derm visit in a couple of years.  His regular pediatrician knows about it and monitors it and did some reading when he was diagnosed because he was interested in the diagnosis.  I was crabby with my insurance b/c the Dr. I loved who had tons of PLEVA kids stopped taking my insurance and the one I switched to didn't give me the same well-informed feeling.  I do plan to go back over the winter since my old Dr. said that we should re-biopsy every 3-5 years just be safe.  I may pay out of pocket for my old Dr.  I guess I keep hoping for that slow burnout to happen.  And I also fear that the more it is focused on the more it may becaome an issue to him which I so badly want to avoid for his sake.  How is your daughter doing with that aspect of it?  Do you manage to go every year?  Thank you SO much for posting the study, I hadn't seen it and found it very interesting also.  I hope the summer sun (and fun) is beneficial to your daughter!  Take care, Angela         
Title: Re: Pityriasis Lichenoides Chronica
Post by: Angela7 on Monday June 18, 2007, 01:59:33 PM
J - I forgot to mention that all 3 ped. derms (who have many other PLC kids) who I have seen over the years are VERY optomistic that it will go away eventually - they all subscribe to the slow burn out over time theory.  Will it take 11 years I wonder?  That would make my son 13 when he clears.  If all else fails, we can always set our kids up on a date - at least they won't have to worry about their spots.  Ha ha.  Gotta keep laughing, right! 
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Tuesday June 19, 2007, 11:35:04 PM
I am a 67 year old white female who has been dealing with pityriasis lichenoides chronica now for 6 years...I have never had less than a hundred spots on me...most of mine are on my legs and arms but have occasionally had a few on my ear and jawline and my neck...I too have run the gammut with the dermatologist taking antibiotics and prednisone and none of it helped...I have had more success using fresh aloe vera gel with really does seem to help the spots heal faster but doesn't by any means keep me from breaking out and I have definitely noticed that anything going on in my life that causes me to be upset DEFINITELY causes me to break out much more so I do believe that nerves play a big part in this even though the doctors have told me that it doesn't...are there any other senior citizens out there dealing with this disease?...I feel like such a leper...living in Texas it is really hard in the summer time wearing long pants and long sleeves but I look so awful I just can't wear shorts or short sleeves.

Hey Charlotte,

I'm interested to know how your spots react to you being upset. Like do they flare up at the same time or the next day. And does it produce more spots? I know how you feel wearing long pants and long sleeves. I did that same thing when I got spots in summer. And it was annoying when people just assume it's contagious. !

When your derm put you on antibiotics did he put you at all on tetracycline? Because I'm pretty sure that's why my spots started going. After the light treatment gave me nothing but mutations.

Regards,
PLC4ME
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Tuesday June 19, 2007, 11:39:24 PM
hello everybody my name is norman i am 24 now.  i have posted in this site back in 04 when i was first DX with pleva.  Since then thigs have been good though there has never been a time where ive been 100 percent pleva free i always have a spot here and there.  Though for the past month its getting bad again to the point where i dont want to take my shirt off at the beach.  It has never been this bad only when i first got DX with it.  I would think during the summer time it would get better because of the more sun exposure but it seems like its getting worst.  i am not alergic to ne thing.  Ive never really had ne health problems till i got dx with pleva a month later i get dx with excema.  should i go back to my meds erythromyocin, and lay out in the sun everyday???

Hey Norman,

When I had it, I had cold showers every morning, and used sensitive body wash (I still do). Just before I got PLC, I was using these lynx shower gels, so maybe if you've started using lynx or a new shower gel, that might be what is causing it.

Like I told Charlotte, I reccomend asking about tetracycline. It was good for me and got rid of the spots. I hope it will be good for other people.

Regards,
PLC4ME
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Tuesday June 19, 2007, 11:42:46 PM
J - I forgot to mention that all 3 ped. derms (who have many other PLC kids) who I have seen over the years are VERY optomistic that it will go away eventually - they all subscribe to the slow burn out over time theory.  Will it take 11 years I wonder?  That would make my son 13 when he clears.  If all else fails, we can always set our kids up on a date - at least they won't have to worry about their spots.  Ha ha.  Gotta keep laughing, right! 

hahah yeah just gotta think positive. In most cases I've read about, kids that get it early will most likely loose it during puberty. Which is around 13.

I hope your son's spots clear up soon and you don't have to wait that long.

Regards,
PLC4ME
Title: Re: Pityriasis Lichenoides Chronica
Post by: Charlotte Marie on Wednesday June 20, 2007, 01:52:17 AM
Thanks for responding PLC4ME...no...the dermatologist didn't put me on tetracycline...I was on doxycycline...also on prednisone...continued that for 2 years...also several different creams which of none helped me...as far as how my nerves affected the spots...it was usually the next day I would notice a fresh new batch of them...unfortunately I am under a lot of stress right now and my arms and legs are virtually covered with them...I have avoided sitting in the sun due to my age and the fear of skin cancer but am seriously thinking of doing at least 15-30 minutes of sun every day just to see if it will help.
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Wednesday June 20, 2007, 09:12:54 AM
Thanks for responding PLC4ME...no...the dermatologist didn't put me on tetracycline...I was on doxycycline...also on prednisone...continued that for 2 years...also several different creams which of none helped me...as far as how my nerves affected the spots...it was usually the next day I would notice a fresh new batch of them...unfortunately I am under a lot of stress right now and my arms and legs are virtually covered with them...I have avoided sitting in the sun due to my age and the fear of skin cancer but am seriously thinking of doing at least 15-30 minutes of sun every day just to see if it will help.

That's a good idea, they do seem to fade with the sun, and try to have cold showers. I does help.
Title: Re: Pityriasis Lichenoides Chronica
Post by: Angela7 on Wednesday June 20, 2007, 04:40:06 PM
Charolette - I just want to let you know that my son's spots initially look worse after he first starts to get sun - so do not fret if they appear redder or angrier after some sun exposure.  That is what always happens with him and then they start to dry up and heal very nicely after that.  I would start with smaller doses to see - maybe 5-10 minutes at the start and build up.  Remember that the spots are very sensitive, exposed skin so you don't want to burn them.  Once he gets a nice base tan, I wait longer to apply his sunscreen.  He is lucky that he tends to get nice and dark and his spots tend to clear up almost completely in the summer.  Right now he still has spots but hopefully they'll be gone soon.  Good luck and hang in there!!   
Title: Re: Pityriasis Lichenoides Chronica
Post by: galpal on Thursday June 21, 2007, 02:21:45 AM
I am so happy to report that my daughter's PLEVA is finally improving.  I took her off the Erythromicin.  She is simply in the sun everyday.   I only use a 30spf everywhere except her legs.  Her legs were especially hard hit by the PLEVAs so I let them have full sun late in the day.  The Plevas started to get better within a week.  She has gone from over a hundred horrible large lesions to a few smaller ones at any given time.  I know she can not sun indefinitely due to sun damage and winter, but I hope that soon the PLEVA will burn out.  The scars left behind  by the old lesions are still quite angry but I do see some fading.  The pox marks will take a lot longer. 

In the meantime, I will be pursue an ENT.  We went to see a top derm in Boston and I brought up the subject of tonsillectomy.  It is not a proven cure(although there is a case study)  for PLEVA but it is known to help some skin conditions.  My daughter gets lots of new ones whenever she has a cold/sore throat.  Strep is rampant in our schools during the winter months.   I also wonder about the timing of this disease.  In many children, it begins around the same time as they start to lose teeth.  My daughter's outbreaks began and were at their worst when she had several loose teeth.  Right now she has none.  Some kids burn out around puberty or is it when they stop losing teeth?  I just think it might provide an entry way for infection which stresses the immune system.  I've read on other sites that people said their outbreaks happened after dental trauma or oral surgery.  Maybe there is a connection.

The doctor was very encouraging that this will go away. 
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Thursday June 21, 2007, 06:40:49 AM
I am so happy to report that my daughter's PLEVA is finally improving.  I took her off the Erythromicin.  She is simply in the sun everyday.   I only use a 30spf everywhere except her legs.  Her legs were especially hard hit by the PLEVAs so I let them have full sun late in the day.  The Plevas started to get better within a week.  She has gone from over a hundred horrible large lesions to a few smaller ones at any given time.  I know she can not sun indefinitely due to sun damage and winter, but I hope that soon the PLEVA will burn out.  The scars left behind  by the old lesions are still quite angry but I do see some fading.  The pox marks will take a lot longer. 

In the meantime, I will be pursue an ENT.  We went to see a top derm in Boston and I brought up the subject of tonsillectomy.  It is not a proven cure(although there is a case study)  for PLEVA but it is known to help some skin conditions.  My daughter gets lots of new ones whenever she has a cold/sore throat.  Strep is rampant in our schools during the winter months.   I also wonder about the timing of this disease.  In many children, it begins around the same time as they start to lose teeth.  My daughter's outbreaks began and were at their worst when she had several loose teeth.  Right now she has none.  Some kids burn out around puberty or is it when they stop losing teeth?  I just think it might provide an entry way for infection which stresses the immune system.  I've read on other sites that people said their outbreaks happened after dental trauma or oral surgery.  Maybe there is a connection.

The doctor was very encouraging that this will go away. 

That is really good news ! I'm glad to hear it is clearing up. That's interesting about the tonsillectomy, I was almost about to have mine removed, got so much tonsilitis when I was a kid but the doctor said if I had one more case then they would remove them, and I didn't.

I'm sure it will go away soon and you can live a happy life without this horrid PLC! :P

Regards,
PLC4ME
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Friday June 22, 2007, 02:12:29 AM
Angela, GalPal, and everyone,

Thank you so much for your information and encouraging words!  I so miss my doctor in Boston (Gellis - children's).  It is hard sometimes to live in an area where you have docs who have only read about PLC.  But thank goodness for skincell. 

Galpal, regarding the tonsillectomy, I had heard something a ways back about that, and theories that bacteria/viruses etc..  present in the body are triggering this PLC/PLEVA.  Is there anything more conclusive to this?  Is your doc willing to do this?  Was he the one who told you about this?  I think there were a couple of cases in Japan.  Please let us know what you find out. 

Angela, I feel so much better after reading your email.  Even though the summer improvement is upon us, and we are installing a pool, it is still there, and I find it frustrating at times (even though I don't let on to my daughter); she will be nine this summer, and it has been seven years now!  My old pediatric derm doc did say that it typically takes til puberty to clear.  (Still, nice to know there are other PLC/PLEVA kids out there, my daughter's age; if it takes forever to clear up, when she is a teenager, she can always have other PLC/PLEVA teenagers to correspond with through Skincell, and relate to.).

Thanks again, everyone.        J
Title: Re: Pityriasis Lichenoides Chronica
Post by: Angela7 on Saturday June 23, 2007, 03:23:41 AM
Hi all - my son had his tonsils and adenoids out when he was 4 (2 years after his first of countless outbreaks and now almost 4 years ago).  No change at all in his spots or the frequency of his outbreaks but the surgery did away with his sleep apnea and terrible snoring.  Certainly seems that many PLEVA sufferers have upper repiratory issues as well.  That recent interesting study that Jahan found lists upper respiratory infection as the leading illness immediately preceding the initial outbreak in the kid's retrospective study.  My son had a bd cold/ear infection right before his first outbreak.  My son still has respiratory issues - chronic cough variant asthma (meaning he gets a bad cough that can linger for weeks anytime he gets a cold but fortunately never any wheezing or breathing difficulties).  And yes indeed - each time he gets sick or under the weather he breaks out in spots - for him it has always been a clear connection as they are always present when he is sick.  My question has always been to the Drs. - does he get sick, immuno-compromised and the spots them come out or do the spots come out, thereby weaking his immune system such that he then gets sick?  I guess it is really a chicken and the egg question but they always go hand in hand.  Any thoughts??  On a brighter note, its great that the sun is helping us out - like Galpal's child, his spots are clearing up nicely - a very deep one on his chin line is closing up quickly thanks to the sun.  Take good care and thanks for the great input and info.   
Title: Re: Pityriasis Lichenoides Chronica
Post by: galpal on Monday June 25, 2007, 01:52:25 PM
Hi Everyone,

I think I had the connection between colds/pleva outbreaks explained to me.  I brought my daughter to Boston Children's last week.  Since this is a t-cell disorder, HER reaction to any stresses, like a cold, immediately are seen through her skin t-cells.  When her immune system is stressed, it causes her skin t-cells to react.  No, the tonsillectomy is not a cure.  But since she is so hard hit over the winter months, it might decrease the outbreaks.  That's hard to measure.  The doctor said I will have to build a case for the tonsillectomy, it won't be performed for pleva alone.  I need to monitor her snoring, colds , etc. and be ready to act if the outbreaks get worse next winter.

 
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Monday June 25, 2007, 02:21:04 PM
Galpal,

Is your Dr. at children's Dr. Gellis?  (We used to go to him when we lived in Boston).  What did they give you for outlook/prognosis there?  Same thing as we have all heard?  Did they mention the puberty thing?  How old is your child and when did he/she get it?
Title: Re: Pityriasis Lichenoides Chronica
Post by: Gordo on Thursday June 28, 2007, 04:23:52 PM
Im a newbie here, and in respect of my skin disease its heartning to read about others with the same, as with the rarety of it, i have never met anyone in real-life with the same. P.L.C. started for me when i was 18, it looked like septicimia, a mass of red spots on my inner arms, trunk, thighs, tops of feets etc. Unsure of what had caused this skin condition or even for many years what it was, i just put up with it. It was clinically diagnosed 4 years ago, and the *Dermo* put me on extremely strong anti-biotics for 3 months, combined with uva treatement once a week, i looked online at this time and saw that for some sufferers those treatments worked, however for me...they made no difference.

I am 37 this year...meaning 19 years with this disorder, its more of a coping process for me now, getting ph balanced body wash, using non-bio wash powder, and as has been mentioned earlier Palmers Cocoa-Butter cream applied after i wash...makes me smell like a big chocolate lol. I find the flakyness of the lesions scabbing and falling happens a lot more at winter, the trail of dead skin-cells left in my wake can be disconcerting, but...i have to put up with it. I had hoped i would grow out of it, or it would just go away but no. Today its mainly affecting the backs of my arms, legs, a little bit on my sides, tops of feet and ankles. I have learned to accept it, live with it, and hope that maybe one day some sort of a decent cure can be found for it, one that would work for all sufferers, i try the little tips i have picked up on the net, but am not a great lover of sunshine...so if that helps or not i am unsure in my case. For such a rare disorder i am also amazed at the amount of replies over the past couple of years on this thread, both sufferers and parents, and as i have said earlier...tis heartning to see. My hopes for those others like me is that they will recover, and on that journey, that various measures of prevention are helping. I will drop by from time to time, but what i will say is that my condition is at its weakest for many years...*fingers crossed*

Best wishes to all

Gordo x
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Thursday June 28, 2007, 05:49:58 PM
Just to say Hi Gordo and welcome to skincell!
Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: galpal on Thursday June 28, 2007, 07:42:20 PM
Hi J

No, we did not see Gellis but one of his associates.  He said they have seen quite a bit of PLEVA.  It is uncommon but not rare.  It does resolve but there is no timeline.  My daughter has had it since last December so she has already gone past the usual timeline for PLEVA.  Right now, the sun is all that works.  She is 7 but puberty was never mentioned.  We were given a strong topical steroid and another cream.  I've used them on new ones but I may stop until after summer because there is no way to know if they are working or if it is the sun.  She now has lots of hyper and hypo pigmentation. 

Hopefully, this thing will burn out before winter comes.  Plus, all of this sun is just not good for irish skin.  Can't keep that up indefinitely. 

Chris
Title: Re: Pityriasis Lichenoides Chronica
Post by: M@t on Wednesday July 04, 2007, 03:19:32 PM
Hi there Gordo! :hi:

Welcome to Skincell!

Kindest Regards,

Matt
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Saturday July 07, 2007, 11:34:02 PM
Hi Everyone, G'day Gordo, welcome to the forum.

Could anyone with PLC or PLEVA please tell me if your spots were ever itchy or a part of your body was itchy before the condition which you might have used Calamine Lotion to anoint.

Regards,
Josh
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Monday July 09, 2007, 12:39:54 PM
Hi PLC4Me,

My daughter never complained of previous itchiness prior to the onset of her PLC.  They appeared very suddenly on her legs, and within a week or so, she had in excess of thirty or more on her legs.  Even now, they don't really itch.  Although they do get flakey and dry, so I do moisturize.  What is your PLC status?  (Free or still having them?)  Weren't you the one who recommended tetracycline?  My daughter is still too young for tetracycline, although I would consider giving it a try when she is older. 

J
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Monday July 09, 2007, 01:19:42 PM
Hi PLC4Me,

My daughter never complained of previous itchiness prior to the onset of her PLC.  They appeared very suddenly on her legs, and within a week or so, she had in excess of thirty or more on her legs.  Even now, they don't really itch.  Although they do get flakey and dry, so I do moisturize.  What is your PLC status?  (Free or still having them?)  Weren't you the one who recommended tetracycline?  My daughter is still too young for tetracycline, although I would consider giving it a try when she is older. 

J

Thanks for replying J,

I've been free of PLC for almost 2 years now. I just asked this because the other day I remembered getting very itchy around my thighs just before I got PLC, and I had used calamine lotion on it. Shortly after the PLC came. I was thinking it may have been caused from the calamine lotion and maybe people who have PLC or alike conditions who are using calamine lotion should try something different to see if it gets better. Just a suggestion. But yeah like you said and like I've experienced, the spots aren't that itchy...
 
Regards,
Josh
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Tuesday July 10, 2007, 09:00:26 PM
Hi PLC4Me,

I like hearing that people do become PLC free (also like ex-itchell).  How long did you have it for all together, (age of diagnosis) and do you think that tetracycline really helped you, or do you think it would have gone anyway?  Sun didn't help much?  Also, when it went away, was it a slow subtle fade out, or did it resolve over a relatively short period?  (I remember my daughter's PLC spots appeared over a relatively short period - a week or more).  Thanks for info,
'
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Tuesday July 10, 2007, 11:48:04 PM
Hi PLC4Me,

I like hearing that people do become PLC free (also like ex-itchell).  How long did you have it for all together, (age of diagnosis) and do you think that tetracycline really helped you, or do you think it would have gone anyway?  Sun didn't help much?  Also, when it went away, was it a slow subtle fade out, or did it resolve over a relatively short period?  (I remember my daughter's PLC spots appeared over a relatively short period - a week or more).  Thanks for info,
'


Hey,

I can't really remember how long mine lasted, think it was about 10 months all up.. Started when I just turned 16. I did all those UVB treatments, 3 times a week. Including putting the creams all over your body every night. As well has freezing cold showers in the morning, with skin sensitive body wash. I didn't find the sun helped much, it may have, but it was helping very slowly that's for sure. I started taking tetracycline about 7-8 months in. And I think it took a couple of months to fully disappear. It was a slow process, but the clearing of spots is very noticable, you can start to see the bigger spots having more trouble fading. They usually came out as scars. I have a few left .. I showed a few of them to my derm, he said one was a mole and another was a mozzi bite.. I was like.... yeh sure. My spots appeared very rapidly too. Broke out near my lower stomach, I remember thinking that they were flea bites, but they kept spreading. Soon enough they were all over my arms and stomach and legs. None came on my face, although they did reach my neck, but those seemed to go. You should put your daughter on tetracycline as soon as she's old enough. Also have you ever tried any anti-fungal creams on the spots?

Regards,
Josh
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Friday July 13, 2007, 01:08:05 PM
Thanks for the info PLC4Me!  I did try an antifungal once, prior to her being diagnosed, but it just seemed to irritate her already sensitive skin.  You were biopsy diagnosed, right?  They didn't think it was pityriasis rosea?  I definitely am going to talk to my doc about tetracycline, if she has this in a few years (hopefully not; she is soon to be 9 years old). 

J
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Friday July 13, 2007, 10:34:15 PM
Thanks for the info PLC4Me!  I did try an antifungal once, prior to her being diagnosed, but it just seemed to irritate her already sensitive skin.  You were biopsy diagnosed, right?  They didn't think it was pityriasis rosea?  I definitely am going to talk to my doc about tetracycline, if she has this in a few years (hopefully not; she is soon to be 9 years old). 

J

Yeah biopsy confirmed it was PLC. You're right.. 9 is way to young to take tetracycline. I don't think I got pityriasis rosea, although some spots looked different to others and one did look like the rosea (this was the scar the derm thought was a mozzi bite.) It wasn't crusty at all, it was rather really smooth and never got sore or itchy. I did scratch it once for the hell of it but couldn't even make it bleed. Keep me updated on your daughters condition.

Josh
Title: Re: Pityriasis Lichenoides Chronica
Post by: tetrifin5 on Friday August 17, 2007, 01:29:03 AM
I am so overwhelmed! Im on antibiotics that make me sensitive to sunlight. I dont have health insurance and have racked up hthousands in E.R. bills and mis-diagnosisis! A real dermatologist has done biopsis and diagnosed me with this wretched PLEVA at last. However he will only work with me over the phone, through his nurses, because I dont have money. I just read on this thread somthing about the desiese being related to HIV! One dr in an Atlanta ER kicke4d me out after 16 hours saying to go get tested for AIDS.  I work with a man with Downs syndrom and my boss thinks Im going to infect everyone with Staph- which I dont have- right?!? This all started with a spider bite on my leg about a month ago. These sores are SINKING! They are PUS-ING! They hurt SOOOOO bad! Also there are big knots under the skin. They are on my face, the palms of my hands, insinde my ears and eyelids-all the way to the soles of my feet. YES EVERYWHERE IN BETWEEN! The palms of my hand are like STIGMATA! I sorta feel like killing myself pretty much. Not really of couse. Argh.  Ill check back tomorrow.
Title: Re: Pityriasis Lichenoides Chronica
Post by: LIGA girl on Saturday August 18, 2007, 11:32:32 AM
Tetrifin, here in Australia we have white tailed spiders and their bite is said to be linked to skin lesions, do you know if yours are linked to the bite you had?

LG
Title: Re: Pityriasis Lichenoides Chronica
Post by: tetrifin5 on Saturday August 18, 2007, 06:50:53 PM
I dont know. Let me make sure Ive got my dates straight. Ok. (Looking at a calander)I got the bite on my inner thigh on July 4. I did not go to a doctor. About 2 weeks later around the 18th I started itching around my breasts and arm pits. By the 23rd the sores looked like the bite, though not as big. That day I went to a "Nextcare" clinic, a sort of "doc-in-the-box" place. The dr. said I had cellulitis (which MIGHT have been a reaction to the bite)and Staph infection (which probably entered through the bite). I was treated with some hard-core antibiotics inb a shot and orally, and prescribed muproxin ointment "for the worst ones" (which was rapidly becomming a joke) That doctor never tested blood, skin  or anything.

It REALLY seems to be related to that wretched bite, though since this initial MIS-diagnosis, other doctors have doubted that I ever got bit by a spider, and have suggested it might just have been the first sore. I still have the bite though. Still larger than all the others. I mean I never saw an insect but Im almost sure of it. I was in a skirt in very,very tall grass! And once I started itching, this stuf spread all over my body very, very rapidly.

I just found this pic of a white-tailed spider bite:
http://en.wikipedia.org/wiki/White-tailed_spider
But mine looks nothing like it. I definatly have the "necro" thing assosiated with my bite(and my sores).
Title: Re: Pityriasis Lichenoides Chronica
Post by: Angela7 on Sunday August 19, 2007, 05:13:15 PM
Dear Tetrifin - so sorry to hear of your skin crisis!  I just wanted to let you know that your spots and descriptions don't sound similar to my son's PLEVA though.  He has never gotten spots on the palms of his hands in all of his years (more than 5 years now) of PLEVA, even when he is covered.  He also rarely gets them on his face, although he has had a few deep sores on his eyelids over the years.  The majority also don't tend to get puss-filled.  He will occasionally get deep ones that eventually scab.  They tend to be the worst on his trunk area and he also gets them on his chest, back and arms and legs when covered.  I wish you luck and am sorry to hear that you are having a tough time.  Take care!   
Title: Re: Pityriasis Lichenoides Chronica
Post by: chie on Tuesday August 21, 2007, 10:45:29 AM
Thanks for the info PLC4Me!  I did try an antifungal once, prior to her being diagnosed, but it just seemed to irritate her already sensitive skin.  You were biopsy diagnosed, right?  They didn't think it was pityriasis rosea?  I definitely am going to talk to my doc about tetracycline, if she has this in a few years (hopefully not; she is soon to be 9 years old). 

J

Yeah biopsy confirmed it was PLC. You're right.. 9 is way to young to take tetracycline. I don't think I got pityriasis rosea, although some spots looked different to others and one did look like the rosea (this was the scar the derm thought was a mozzi bite.) It wasn't crusty at all, it was rather really smooth and never got sore or itchy. I did scratch it once for the hell of it but couldn't even make it bleed. Keep me updated on your daughters condition.

Josh
hello there!i've been diagnosed with PLC a year ago and had undergone many tests and treatments but it seems all of it doesn't help really i even took antibiotics but until now brown spots are present and some of it are becoming white that seems to be the scars.these few days i've  been trying to research and read about this PLC because it really bothers me having it in my body for long time now but when i read some of the cases here i feel terrible that it will really last for years i cant imagine my life having this for long time.does tetracycline helps really for these case?


Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Tuesday August 21, 2007, 10:54:38 AM
Thanks for the info PLC4Me!  I did try an antifungal once, prior to her being diagnosed, but it just seemed to irritate her already sensitive skin.  You were biopsy diagnosed, right?  They didn't think it was pityriasis rosea?  I definitely am going to talk to my doc about tetracycline, if she has this in a few years (hopefully not; she is soon to be 9 years old). 

J

Yeah biopsy confirmed it was PLC. You're right.. 9 is way to young to take tetracycline. I don't think I got pityriasis rosea, although some spots looked different to others and one did look like the rosea (this was the scar the derm thought was a mozzi bite.) It wasn't crusty at all, it was rather really smooth and never got sore or itchy. I did scratch it once for the hell of it but couldn't even make it bleed. Keep me updated on your daughters condition.

Josh
hello there!i've been diagnosed with PLC a year ago and had undergone many tests and treatments but it seems all of it doesn't help really i even took antibiotics but until now brown spots are present and some of it are becoming white that seems to be the scars.these few days i've  been trying to research and read about this PLC because it really bothers me having it in my body for long time now but when i read some of the cases here i feel terrible that it will really last for years i cant imagine my life having this for long time.does tetracycline helps really for these case?




There's no harm giving it a try. Just make sure you don't expose yourself to too much sunlight when you are taking them. i found mine clearing up a few months after I started taking them.
Title: Re: Pleva
Post by: galpal on Sunday August 26, 2007, 06:44:13 PM
Tetrifin,

I hope you are doing better.  Sounds like you were diagnosed by a derm.  The first outbreak is really terrifying.  You've been hit really hard.  My daughter had hundreds with the necro and many became infected with staph.  It will get better.  The sun has been a miracle cure although we are very, very careful. 

Remember, it will not last forever.  You will get better. 
Title: Re: Pityriasis Lichenoides Chronica
Post by: rise_against_girl on Tuesday September 18, 2007, 03:45:39 AM
hey everyone. i am new to this site, i just joined today. I'm a little confused on how it works lol. but i have just been diagnosed with Pityriasis Lichenoides, i have a rash all over my body, i also have these white dots all over my body. does anybody have these? and do they scar? i am really upset about this disease, iv had it for a little over 2 months and my family doctor just told me a few days ago what i have. iv seen 4 different doctors and a specialist and they finally told me the results. i am just so upset about it, its something im really insecure about, and i only wear sweaters now because i dont want anyone to see it. is their any helpful tips??
Title: Re: Pityriasis Lichenoides Chronica
Post by: rise_against_girl on Tuesday September 18, 2007, 03:51:32 AM
i am honestly so upset about having this Pityriasis Lichenoides. i feel sick about it, i havent slept much lately. im only 18 years old i cant imagine having this all over my body for the rest of my life. i dont even feel attractive anymore because of it. i have tons of white dots all over my body. do they scar? i really need to know to feel at ease with myself. i really hope they dont scar.
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Tuesday September 18, 2007, 06:26:19 AM
hey everyone. i am new to this site, i just joined today. I'm a little confused on how it works lol. but i have just been diagnosed with Pityriasis Lichenoides, i have a rash all over my body, i also have these white dots all over my body. does anybody have these? and do they scar? i am really upset about this disease, iv had it for a little over 2 months and my family doctor just told me a few days ago what i have. iv seen 4 different doctors and a specialist and they finally told me the results. i am just so upset about it, its something im really insecure about, and i only wear sweaters now because i dont want anyone to see it. is their any helpful tips??

Hey, it can be hard to get used to at first. Anyone who notices it just automatically assumes it's contagious. But after a while you will stop caring what people think and it will make you a better person. Trust me :)

I've also told people about an antibiotic called tetracycline, which I was taking when my PLC vanished. You should ask your derm about it.

Goodluck, take care,
PLC4ME
Title: Re: Pityriasis Lichenoides Chronica
Post by: Nichole on Thursday September 20, 2007, 11:00:17 PM
Hello, I've had Pleva for over a month now.  I need to know if anyone has been on a cruise.  My dots started one day after returning from a cruise to alaska over the summer.  Also, a few months back I had the most painful bite of my life (guessing a spider) that left a huge scar.  Has anyone else had a simliar experience?

I'm 20 years old, this is not the best time to be covered in painful red bumps and scabs.  They just keep spreading....from my eyelids down to my toes.  Will they ever stop???  Is anyone else on the verge of a mental breakdown?  And does anyone else feel pain accompanied by the itching?  I get a feeling of waves of pins and needles sweep across my neck and back.  How do you guys deal with this pain?
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Friday September 21, 2007, 01:39:10 AM
Hello, I've had Pleva for over a month now.  I need to know if anyone has been on a cruise.  My dots started one day after returning from a cruise to alaska over the summer.  Also, a few months back I had the most painful bite of my life (guessing a spider) that left a huge scar.  Has anyone else had a simliar experience?

I'm 20 years old, this is not the best time to be covered in painful red bumps and scabs.  They just keep spreading....from my eyelids down to my toes.  Will they ever stop???  Is anyone else on the verge of a mental breakdown?  And does anyone else feel pain accompanied by the itching?  I get a feeling of waves of pins and needles sweep across my neck and back.  How do you guys deal with this pain?

I didn't get an pain when I had PLC. I don't think that bite would have had anything to do with it. You should get a biopsy done though.

Regards,
PLC4ME
Title: Re: Pityriasis Lichenoides Chronica
Post by: Nichole on Friday September 21, 2007, 04:37:00 AM
I had a biopsy done last month...it came up as PLEVA  :-[
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Friday September 21, 2007, 04:45:52 AM
I had a biopsy done last month...it came up as PLEVA  :-[

All you can do now is really just wait it out. Get lots of sun, unless your on antibiotics. Try light therapy, it may help to clear up some spots. If you saw a derm he should have perscribed you some creames. They also help , just make sure your clean when you apply them. And have cold showers, if you have hot showers it will flare up the spots. I felt like I was going to have a mental breakdown, worried about what everyone would think etc. But I just went on with life and it ended up clearing up. I've told a few other people who have had PLC or PLEVA to try tetracycline, it's an antibiotic which I believe had an influence on the clearing up of my skin. You should ask your derm about it. GOodluck with it all, take care.

Regards,
Josh
Title: Re: Pityriasis Lichenoides Chronica
Post by: Nichole on Thursday September 27, 2007, 07:30:39 PM
So did yours clear up completely or what?  Was it pleva or plc?
Title: Re: Pityriasis Lichenoides Chronica
Post by: stillitchy on Tuesday November 20, 2007, 03:02:37 PM
Hi, I am a new member to this wonderful site. It is comforting to know that I am not the only one with this strange and annoying disease.

What follows is a recent letter to my GP, getting him up to speed concerning my condition.

--------------------
Dear Doctor B,

I wanted to float a theory by you concerning the recent blood work results that you had contacted me about, as well as finally address a condition that I was hoping would just go away.

Early in the year 2000 I suffered for months with a strange malady that was finally diagnosed after three biopsies and a dozen dermatologist’s visits as being consistent with Pityriasis lichenoides et varioliformis acuta (PLEVA) or Mucha-Habermann disease. It began innocently enough with a single itchy sore on my wrist, but before it was through, most of my skin was covered, save for my face, palms, bottom of feet and privates, with itchy, red, leaking blisters and sores. Doctor K and the dermatologists tried oral prednisone, oral anti-fungals and oral ant-biotics, as well as topical anti-fungals, topical anti-biotics and topical steroids before it finally began to clear. Some of the open sores got quite infected and my limbs began to swell and retain fluid. I looked like a leper version of Popeye. I was also running a fever for much of the time. I was told that I was a day or two before getting admitted to the hospital and I actually wrote my will before things began to turn for the better. I have included photos that you may add to my medical record, and have other ones to show if you decide that I should come in for a consultation concerning this issue.

Just before the attack on my skin started, I had two very bad colds in a row – I do not usually get many colds, never mind two in the same month – and was also scratched *very* deeply on the back of the hand by a cat who was, shall I say, not the cleanest animal that I have every encountered. I was also under extreme stress at the time. So I feel that a combination of the stress and colds may have triggered the attack on my skin. I was tested for allergies, had none, and was tested at the request of my dermatologist for HIV and hepatitis, both negative. I think he was just shocked to see my skin. Afterwards he told me that ‘it was the worst that he had ever seen’.

I now have what I believe to be pityriasis licehnoides chronica (PLC). The acute version went away for good (I hope), but the mild version has waxed and waned constantly since 2000. It goes away for the summer months, but starts up again each and every November, and worsens as the dreary New England weather does. By March I am usually rubbing skin lotion and steroid cream over my arms, legs, back of hands, top of feet, dorsal trunk, etc. Many of the pustules or papules (whatever they are) appear on or around where the biopsy was. As well as in the areas that were affected the most. This year my blood work was a month or so later than last year, that is while my skin just started acting up. Could this explain the 1% differential difference that you mentioned to me on the phone concerning my lab results?

Lastly, I was wondering if there were tests and steps that we could take to rule out Lymphomatoid Papulosis, since it appears to be related to PLEVA, and more easily transforms into Lymphoma, and perhaps also somehow confirm that what I am describing is in fact PLC. I have never seen a pathologist or hematologist for this issue. 

I see this as both an opportunity to get the blood snapshot issue resolved in my mind and to give me some peace concerning my ongoing skin condition. Thanks for you time.

-----------
I recently had some blood work done and my GP called to tell me that my Lymphocytes differential was 1% higher than last year. He was not overly concerned, stating that a hematologist would not even perform tests, on bone marrow, for example, as a result of the differential results, but wants me to follow-up with more blood work in a couple of months. Could PLC possibly account for the slightly elevated T cell count?

One other question, has anyone had luck with probiotics in keeping PLC at bay?

Thanks in advance


Title: Re: Pityriasis Lichenoides Chronica
Post by: stillitchy on Tuesday November 20, 2007, 03:29:27 PM
I am a 44 year old male.
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Tuesday November 20, 2007, 07:54:51 PM
Hi everyone I am leaving this link here because it is all related. Please note in bold.
http://www.skincell.org/community/index.php/topic,23062.msg285624.html#msg285624
Please read about autoimmunity, (an abnormal immune response to self. *auto*= Greek for self) because this is the cause of the resulting manifestation in your skin known as PLC.

You are genetically predisposed to autoimmunity, and the manifestations of this abnormal immune response, (autoimmune response) wax and wane in severity throughout the period of manifestation. Remission can occur in some cases depending on the condition itself, but usually only before the age 45.There are always exceptions to the rule of course. Everything on this thread , age of onset, waxing and waning, treatment offerred, all relate to autoimmunity.

Food and diet will not rid you of this condition nor relieve it. Stress exascerbates any skin condition , it is not the cause of them. There is no cure for autoimmunity, you are born genetically predisposed to it, and these conditions only occur in people who have this genetic predisposition. An autoimmune condition is the pathogenic result of an abnormal immune response (autoimmune response) to normal self proteins. Auto=Greek for *self*Normal chemical signalling processes, which occur naturally between different functioning cells of the immune system, malfunction, (this can happen at any time of life in a predisposed person) and the abnormal immune response (autoimmune response) is stimulated.
It is still in research, but as a result of a faulty gene or genes, in combination with exogenous or endogenous factors (or both)these immune cells malfunction,  presenting an antigen the same as a protein of self, and consequently, within the abnormal immune response, abnormal antibodies (autoantibodies )are produced to "fight and destroy" this normal protein, now presented because of the antigen, as a threat.
Unlike normal antibodies produced within a normal immune response, these autoantibodies do not receive a "signal" to "switch off", because the regulatory Tcells are also malfunctioning, so they remain out reaking havoc! It depends on the information transcribed from the faulty gene where, and which protein is involved, and which antibody class is produced, which determines which autoimmune condition you have. (You can have more than one).
Most first appear around the age of 60, but in some conditions which I think PLC is one, the condition rarely develops after middle age. In children, most revert back to normal before puberty.
 
All that can be done is to suppress the production of the autoantibody in question , by using immunomodulating drugs. Unfortunately this does not target just the autoantibody in question, but the whole of the immune system, hence the reason to have blood checked frequently.Sometimes the condition manifested, does not require Immunosuppressants but a steroid, which is an antinflammatory, or antibiotics or which also contain a good anti-inflammatory agent.Inflammation is the body's first line of defence within an immune response, reduce the inflammation, and the symptoms subside.

Lymphomatoid Papulosis is cutaneous lymphoma. Lymphoma is cancer of the white blood cells.
PLC is thought to be a Lymphoproliferative disorder.
Quote
Lymphoproliferative: Referring to the proliferation of the bone marrow cells that give rise to lymphoid cells (such as lymphocytes and plasma cells) and reticuloendothelial cells (such as macrophages,  which engulf foreign particles).
(As I explained above, these are antigen-presenting cells, called Dendritic cells)
The term lymphoproliferative is in contrast to myeloproliferative which refers to proliferation of bone marrow elements from which come red cells, granulocytes, and platelets.
Both terms -- lymphoproliferative and myeloproliferative -- can apply to conditions that are entirely benign, premalignant, or frankly malignant
I understand that plc and pleva very rarely result in cutaneous lymphoma or Lymphomatoid Papulosis.

Quote
Lymphoproliferative disorders are conditions in which there excessive numbers of lymphocytes (T- and B-cells), including lymphoma (a malignant growth of lymphocytes). The idea that pityriasis lichenoides may be a lymphoproliferative disorder arises because lesions of patients with pityriasis lichenoides showed the presence of immune T-cells with specific CD30+ markers or antigens in PLEVA,and loss of CD7 antigens on T-cells in PLC.
These characteristics of T cells are indicators of lymphoproliferative disorders. The third theory behind the cause of pityriasis lichenoides is the detection of circulating immune complexes, aggregations ( A massing together or clustering of independent but similar units ) of antigens and antibodies deposited in the skin in some patients with the condition(As occurs with my own condition.)
The above quote, taken from this link below, proves most of my explanation and why you had an increase of T-cell count stillitchy, but maybe your doc was not anxious because the count was within the guide lines of this condition?
http://dermnetnz.org/scaly/pityriasis-lichenoides.html
I hope this helps with the understanding of these conditions.
Bunnie


Title: Re: Pityriasis Lichenoides Chronica
Post by: stillitchy on Tuesday November 20, 2007, 08:55:31 PM
Thank you for your quick response and all of the generous info, bunnie!

Mike
Title: Re: Pityriasis Lichenoides Chronica
Post by: galpal on Tuesday December 04, 2007, 11:40:56 AM
Still Itchy,

RE:  Probiotics and everything else-do anything to boost your immune system but...

We tried them but it did not change my daughter's skin condition.  Only sun helped and spot treatment with Fucidin the minute they appear.  Seems to keep them from getting huge but doesn't stop them.

Her second outbreak (now) is nothing like the first one last winter.  10 spots vs. 300.

Hope you feel better.
Chris
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Tuesday December 04, 2007, 12:10:20 PM
Quote
RE:  Probiotics and everything else-do anything to boost your immune system but...
This bears no relation whatsoever to PLC. Plc is as I described above, nothing whatsoever to do with diet. Far from "boosting" the immune system, this is the last thing that should be attempted as within this abnormal response, there is an over production of the autoantibody, that is why immunosuppressants are prescribed for these auitoimmune diseases, to suppress the immune system. Please note the word "excessive" in the quote in my previous post, "Lymphoprolific disorders".
Unfortunately there are no drugs yet available that can pin-point and suppress just the autoantibody in question, and therefore ALL of the immune system is suppressed. That is why, people on these immunomodulating drugs must have their blood checked regulary.Some autoimmune conditions do not require immunosuppressants,usually though a broad spec antibiotic is prescribed in PLC, such as Erythromycin or Tetracycline, not just as an antibiotic, but because they contain a very good anti-inflammatory agent. Inflammation is the body's first line of defence, stimulated within any immune response, whether abnormal or normal.  Reduce the inflammation, and the symptoms of plc subside.Quote below from this link
http://www.emedicine.com/DERM/topic334.htm
Quote
Most cases of PLEVA cannot be attributed to any one cause and are idiopathic
Idiopathic cases occur spontaneous and for no known reason. Idiopathic cases occur usually by a malfunction of these immune cells, of and by self alone, and this genetic predisposition to autoimmunity resulting in this malfunction of immune cells, in such "idiopathic" cases, is not stimulated by *outside the body* enviromental factors , but by internal factors of *self*, stimulating this malfunction. See "Understanding Medical Terminology" thread.
Latin                                                              Greek
idiopathia                   = (primary disease) =       idiopatheia,
idio=(one's own)                                     idios = (personal)
                                                +
patheia=(feeling)                                     pathic= (suffering)
Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: godlyrooted on Thursday January 24, 2008, 10:57:12 PM
hi, everyone. i to have PLC and it really sucks cause i never had no crap this mess up before in my life. i just got it one day out of the blue. but anyways they say there is no cure for it and i did alot of research on this and i found some medicine that they say works in some people, to stop PLC, i using it now i hope it works, ive been using it for about a month now and i notice a big difference already so hopefully it stops it for good. but im writing this so you'll that are suffering with this screwed up desease so u can try it to and maybe it will help u out, god bless u all and keep tha faith. but hes all what i can find on this desease....

Pityriasis lichenoides may not always respond to treatment and relapses often occur when treatment is discontinued. If the rash is not causing symptoms, treatment may not be necessary. Large ulcerations found in febrile ulceronecrotic Muchas-Habermann disease require local wound care.

In cases where treatment is necessary, there are several different therapies available. Current recommended first-line therapies include:

Sun exposure may help to resolve lesions but sunburn should be avoided.
Topical steroids to reduce irritation. In more recent years concerns raised about their side effect profile has led to the increased use of nonsteroidal topical immunomodulators.
Topical immunomodulators such as tacrolimus or pimecrolimus. Tacrolimus ointment applied twice daily has been used successfully to treat patients with PLC.
Oral antibiotics. The most common antibiotics used are erythromycin and tetracycline. These antibiotics have been used to treat both PLC and PLEVA.
Second-line therapies include:

Phototherapy – artificial ultraviolet radiation treatment with UVB or PUVA has been used with varying success both in patients with PLEVA and in those with PLC.

Third-line therapies include:

Systemic steroids
Methotrexate given orally or by IM injection has been used in PLC and PLEVA. It is often used to treat febrile ulceronecrotic Muchas-Habermann disease
Acitretin
Dapsone
Ciclosporin
For more resistant and severe disease a combination of the above may be used
Pityriasis lichenoides may persist for some years but is generally fairly harmless, although there have been rare reports of malignant transformation. Because of this, regular follow-up is recommended
Title: Re: Pityriasis Lichenoides Chronica
Post by: godlyrooted on Thursday January 24, 2008, 11:00:32 PM
hi, everyone. i to have PLC and it really sucks cause i never had no crap this mess up before in my life. i just got it one day out of the blue. but anyways they say there is no cure for it and i did alot of research on this and i found some medicine that they say works in some people, to stop PLC, i using it now i hope it works, ive been using it for about a month now and i notice a big difference already so hopefully it stops it for good. but im writing this so you'll that are suffering with this screwed up desease so u can try it to and maybe it will help u out, god bless u all and keep tha faith. but hes all what i can find on this desease....

Pityriasis lichenoides may not always respond to treatment and relapses often occur when treatment is discontinued. If the rash is not causing symptoms, treatment may not be necessary. Large ulcerations found in febrile ulceronecrotic Muchas-Habermann disease require local wound care.

In cases where treatment is necessary, there are several different therapies available. Current recommended first-line therapies include:

Sun exposure may help to resolve lesions but sunburn should be avoided.
Topical steroids to reduce irritation. In more recent years concerns raised about their side effect profile has led to the increased use of nonsteroidal topical immunomodulators.
Topical immunomodulators such as tacrolimus or pimecrolimus. Tacrolimus ointment applied twice daily has been used successfully to treat patients with PLC.
Oral antibiotics. The most common antibiotics used are erythromycin and tetracycline. These antibiotics have been used to treat both PLC and PLEVA.
Second-line therapies include:

Phototherapy – artificial ultraviolet radiation treatment with UVB or PUVA has been used with varying success both in patients with PLEVA and in those with PLC.

Third-line therapies include:

Systemic steroids
Methotrexate given orally or by IM injection has been used in PLC and PLEVA. It is often used to treat febrile ulceronecrotic Muchas-Habermann disease
Acitretin
Dapsone
Ciclosporin
For more resistant and severe disease a combination of the above may be used
Pityriasis lichenoides may persist for some years but is generally fairly harmless, although there have been rare reports of malignant transformation. Because of this, regular follow-up is recommended
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Thursday January 24, 2008, 11:42:37 PM
Hey I'm sorry to hear another person has this dreadful condition. I pray it will clear for you. And I hope this new med will be helpfull.

Regards,
PLC4ME
Title: Re: Pityriasis Lichenoides Chronica
Post by: Doggburner on Monday February 18, 2008, 04:42:19 PM
I just wanna know, is there someone out there trying to find out a direct cure for PLEVA?
Title: Re: Pityriasis Lichenoides Chronica
Post by: taty on Monday February 25, 2008, 06:32:54 PM
Janice,

Do some of yours have a fine scale that peels off, and is your skin dry?  What else did they say to help you out?

Jahan
Title: Re: Pityriasis Lichenoides Chronica
Post by: taty on Monday February 25, 2008, 06:46:09 PM
Hi everyone,
I've had plc for over 20 years now and it seems like It's not getting any better. Anyone ever try Cellcept? My derm at UCLA recommended it but I'm afraid to take anymore meds. I don't mind the red spots, its the white spots after the skin has peeled off that I don't like. I have tan skin and the white spots shows more.
Title: Re: Pityriasis Lichenoides Chronica
Post by: LIGA girl on Monday February 25, 2008, 08:05:04 PM
Hi Taty

I take Cellcept, I have been taking it for 8 months with no bad effects. You have to have regular blood tests while you are on it which doesnt bother me but does some. I have to take immunesuppressants as my skin condition is life threatening otherwise and I have taken other drugs before it, Cellcept has fewer side effects for me than the others, in fact I dont notice any  from it. Feel free to ask me any questions about it ....

LG
Title: Re: Pityriasis Lichenoides Chronica
Post by: taty on Monday February 25, 2008, 08:13:24 PM
Thanks for replying back!! What are the side effects? Has it helped with your skin condition? I appreciate you writing to me. I hope get better!
Title: Re: Pityriasis Lichenoides Chronica
Post by: LIGA girl on Monday February 25, 2008, 08:20:39 PM
Well, like I said I dont really have any, tho I dont drink much now only the odd glass of wine. With the ones I took before Cellcept I had hair loss, on Imuran, I got anemia and jaundice on Dapsone and I had a really bad reaction that nearly killed me on sulfasalazine so Cellcept has been really good for me. All the side effects stop as soon as you stop taking the drug so if you did get a bad effect you can just stop it, in my case they had to find another drug.  I have had good outcomes with my skin from it too, it has worked better than the others. I would give it a try if i were you, but it's very expensive, I get mine funded by the hospital where my doc works tho .... LG
Title: Re: Pityriasis Lichenoides Chronica
Post by: taty on Monday February 25, 2008, 08:48:25 PM
Sigh...still kinda scared. My doc did mention that I have to take a few blood test while I'm on the meds. I will think about it some more. Thank you soo much for responding. I will definitely consider using it. I don't have anything else to loose.
thanks again!
Title: Re: Pityriasis Lichenoides Chronica
Post by: LIGA girl on Monday February 25, 2008, 08:53:16 PM
Best of luck with it Taty, whichever way you go. Sometimes a course on a med like that can put your disease into remission and for that alone it might be worth a try....  LG
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Monday February 25, 2008, 09:10:44 PM
Hey Taty,

I would be careful taking the Cellcept, just start with a really small dose and see what effects it has.

Here's a helpful link:

http://www.drugs.com/cellcept.html

I wish you all the best and pray you will clear up.

Try not to stress.
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Monday February 25, 2008, 09:15:16 PM
Hi Taty, I was on cellcept for a long time too, it is mainly used in kidney transplants, as it is an immunosuppressant. My hair didn't fall out or anything, but it is a notorious drug for damaging the gums, ie gingivitis, so regular dental care is essential. I was ok on it too, and I was on other drugs as well for my skin disease which is a more severe form of liga girl's. Regular blood samples are taken as LG has pointed out, just to make sure your blood levels are stable. The thing is about all these drugs that are immunosuppressants ( and I have had a real cocktail of them over the years) is the damage (if any ) which can occur long after you have finished the treatment. Having said that, those cases are few and far between, from what I understand anyway, and if this drug is going to help you now, then take it. The thing is you see all drugs effect people differently, and of course have different effects on the autoimmune disease in question. The other thing of course, is that some of us do not have a choice, and would try anything for relief or if one's life was in jeopardy because of the disease.
bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: LIGA girl on Monday February 25, 2008, 10:04:42 PM
I would be careful taking the Cellcept, just start with a really small dose and see what effects it has.

Here's a helpful link:

http://www.drugs.com/cellcept.html

Yes, all the drugs used to treat these diseases are immunesuppressants, but as I said I have not had any bad side effects from this one, the thing about side effects is that not everyone has them all. It talks mainly about pregnant women the risk to the fetus is the main problem, the other is the susceptibility to infection. I have had two infections since being on it and antibiotics cleared them up both times. I am careful with being round people who are ill too ....
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Wednesday February 27, 2008, 03:30:11 PM
Dear fellow PLC/PLEVA-ers,

I read an interesting article on the net about PLC being treated with bromelain.  It was an Italian study.  I don't have the link, but you could google it.  Apparently, these people were treated with bromelain (pineapple extract) for three months and had remission.  Sounds too good to be true.  I am sure it was not a "double blind controlled" thing; but still, intriguing.  I read up on bromelain, and it does indeed seem to have alot of effects on immune system/brain, etc...  for this reason though, my husband and I decided to wait on trying bromelain out on my daughter.  She is only 9.  I wouldn't rule it out for when she's older (post puberty ... fingers crossed that this would have burned out anyway).  Let me know if anyone else has heard of it.  It might be worth reading up. 
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Wednesday February 27, 2008, 06:03:19 PM
Hi again taty, ciclosporin is normally just offered to patients whose disease is being unresponsive to other treatments usually offerred, such as topical steroids, or taking other immunosuppressants. Topical Tacrolimus ointment has greatly improved PLC in many cases , so I understand, and my derm reckons that tacrolimus is one of the least damaging of the immunosuppressants. (Actually my OPHthalmologist said exactly the same thing just yesterday!) I am using it in an unlicenced way on my tongue. I know a lady on cellcept at this moment in time,  who has a phenotype of PLC, and she has shown a marked improvement since starting it. You say you have had PLC for over 20 years, you will always carry the predisposition to it even if you go into remission, it is a faulty gene and part of your DNA, this with other either self or nonself factors, or both, stimulates this abnormal immune response.
Quote
still kinda scared. My doc did mention that I have to take a few blood test while I'm on the meds. I will think about it some more.
Please don't be afraid, or do try not to be. :hugs: These blood tests are just taking a blood sample regulary about every 2 or 3 months to check if your blood levels are within the acceptable boundries. Just think it just might do the trick and kick it into complete remission! hopefully for good!
Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: tetrifin5 on Saturday March 01, 2008, 08:25:53 PM
Hello, I've had Pleva for over a month now.  I need to know if anyone has been on a cruise.  My dots started one day after returning from a cruise to alaska over the summer.  Also, a few months back I had the most painful bite of my life (guessing a spider) that left a huge scar.  Has anyone else had a simliar experience?

I'm 20 years old, this is not the best time to be covered in painful red bumps and scabs.  They just keep spreading....from my eyelids down to my toes.  Will they ever stop???  Is anyone else on the verge of a mental breakdown?  And does anyone else feel pain accompanied by the itching?  I get a feeling of waves of pins and needles sweep across my neck and back.  How do you guys deal with this pain?
Ok I have not been on in a long time. Thanks to everyone who responded to my posts.
This jumps out at me because as you can see in my post on the same page as this one (in quotes) Mine all started with an awful, painful spider-bite. At least thats what it seemed to be. And the lashing feeling of needle rain sweeping large parts of the body, very much like having "a chill", I know that too. And each momentary "prick" experienced in this "chill" eventually becomes an actual sore.
They some times form in succession, in perfect spirals, usually ascending in "angriness" even, starting with the one in the middle being the worse, and each one spaced perfectly apart spirals out like a some kind of macabre art. Other times they mey seem farther between, in time and area, but later I will notice the scars form perfect lines sometimes crossing, as if some strange, giant grid were laid across my body .(What Im saying is, for example: Say I gett a huge, angry "weeper" on my neck on the left behind my ear. A few days later I got one on my breast, directly below the first...a week goes by and maybe the are waning and, BAM, a less sever one pops up, 13 inches down on my left hip. Perfect line. Then my left knee, my  left foot, THEN THE BACK OF MY left LEG< MY LEFT BUTT< MY BACK UNTIL IT HAS MADE A FULL CIRCLE!) It is a bluprint of torment, a script of MADNESS
Once I had several very,very angry ones form around my outter labia. I have had them in my mouth, eyelids(once on the inside rim), INSIDE my nose,and in my ears.
Has anyone ever gotten social security for this?
Now I go to the tanning bed every week and have been on erythrocin for 7 months. At one time I thought I was getting better but now I am breaking out again in the large, painful, deep, and weeping sores. My body is scar-speckeled. I have no insurance and even when I promise "private pay" cannot get in to see a doctor. The receptioist cups the phone I hear her say "Its that Stephenie girl" and the doctor says "What does she want,Just call it in", hence, with my most rescent attempt I did get my scrip renewed for another year.
I am tired. I am worried about long-term effects of antibiotics as well as tanning. Also I have purchased stri-vectin and hope it might help with the deep scarring, although the cycle continues. But how does it all relate? 3 weeks ago I quit smoking and am using the nicotene patch. It is working well for me...But will it complicate my pleva? Does it effect tanning?
 I am so depressed over this...Or is this happening because I am depressed. Sigh.

 I will follow the advise from here and search for a specialist doctor. I can give them my soul for payment.
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Saturday March 01, 2008, 09:14:00 PM
Hey tetrifin5 ,

That's so weird how it spirals, when I started getting mine it started on my stomach and spread like all over like butter. Although some parts I didn't get it which you mentioned like the eyelids and inner ears and nose. I was lucky as mine only lasted just under a year or so. From then I think I learnt to live with it and didn't get stressed as much because most people knew I had some sort of condition. Since I Don't scientists have discovered exactly what causes PLC, it could be related to anything, and be caused by anthing including emotions. You should try and map out what you were doing in your life when it started to disappear and what happened when it started to come back? Is this when the depression hit? I think you need to stop worrying so much and just give in, let it run's it's course. Also you should probably use UVB treatment that is more specific for diseases, like the one's at the derm. About 2 or 3 times a week. If that doesn't work I would find a different method . (UVB never really did anything for me).

Anyway I wish you all the best,

Hope your skin clears soon and you can be happy again.

Take care,
PLC4ME
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Saturday March 01, 2008, 11:22:07 PM
Hello tetrifin5, If you haven't already, please read my post on here 286. This is what you have tetrifin5, this is what and why this is happening in you, it matters not what you were doing, what you ate or anything, it is just a combination of multigenous factors in you malfunctioning; and you need the help of a really good dermatologist if you have got a bad outbreak at present. I note you don't have insurance? I don't know what you can do in order to get some help? (I live in the UK, and these problems never arise with us, fortunately.) I am concerned for you if it is breaking out again, as bad ,most especially as you have explained that you got it on the membrane inside the eyelids. It can affect the eyes. Your GP needs a wake up call, does he know anything about these diseases? if not you should educate him! I sincerely hope that you are able to get the correct treatment to keep it under control. Please keep us updated on how you get on, and if you manage to get to a derm especially.
Regards Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: tetrifin5 on Sunday March 02, 2008, 01:08:01 AM
Hi everyone I am leaving this link here because it is all related. Please note in bold.
http://www.skincell.org/community/index.php/topic,23062.msg285624.html#msg285624
Please read about autoimmunity, (an abnormal immune response to self. *auto*= Greek for self) because this is the cause of the resulting manifestation in your skin known as PLC.

You are genetically predisposed to autoimmunity, and the manifestations of this abnormal immune response, (autoimmune response) wax and wane in severity throughout the period of manifestation. Remission can occur in some cases depending on the condition itself, but usually only before the age 45.There are always exceptions to the rule of course. Everything on this thread , age of onset, waxing and waning, treatment offerred, all relate to autoimmunity.

Food and diet will not rid you of this condition nor relieve it. Stress exascerbates any skin condition , it is not the cause of them. There is no cure for autoimmunity, you are born genetically predisposed to it, and these conditions only occur in people who have this genetic predisposition. An autoimmune condition is the pathogenic result of an abnormal immune response (autoimmune response) to normal self proteins. Auto=Greek for *self*Normal chemical signalling processes, which occur naturally between different functioning cells of the immune system, malfunction, (this can happen at any time of life in a predisposed person) and the abnormal immune response (autoimmune response) is stimulated.
It is still in research, but as a result of a faulty gene or genes, in combination with exogenous or endogenous factors (or both)these immune cells malfunction,  presenting an antigen the same as a protein of self, and consequently, within the abnormal immune response, abnormal antibodies (autoantibodies )are produced to "fight and destroy" this normal protein, now presented because of the antigen, as a threat.
Unlike normal antibodies produced within a normal immune response, these autoantibodies do not receive a "signal" to "switch off", because the regulatory Tcells are also malfunctioning, so they remain out reaking havoc! It depends on the information transcribed from the faulty gene where, and which protein is involved, and which antibody class is produced, which determines which autoimmune condition you have. (You can have more than one).
Most first appear around the age of 60, but in some conditions which I think PLC is one, the condition rarely develops after middle age. In children, most revert back to normal before puberty.
 
All that can be done is to suppress the production of the autoantibody in question , by using immunomodulating drugs. Unfortunately this does not target just the autoantibody in question, but the whole of the immune system, hence the reason to have blood checked frequently.Sometimes the condition manifested, does not require Immunosuppressants but a steroid, which is an antinflammatory, or antibiotics or which also contain a good anti-inflammatory agent.Inflammation is the body's first line of defence within an immune response, reduce the inflammation, and the symptoms subside.

Lymphomatoid Papulosis is cutaneous lymphoma. Lymphoma is cancer of the white blood cells.
PLC is thought to be a Lymphoproliferative disorder.
Quote
Lymphoproliferative: Referring to the proliferation of the bone marrow cells that give rise to lymphoid cells (such as lymphocytes and plasma cells) and reticuloendothelial cells (such as macrophages,  which engulf foreign particles).
(As I explained above, these are antigen-presenting cells, called Dendritic cells)
The term lymphoproliferative is in contrast to myeloproliferative which refers to proliferation of bone marrow elements from which come red cells, granulocytes, and platelets.
Both terms -- lymphoproliferative and myeloproliferative -- can apply to conditions that are entirely benign, premalignant, or frankly malignant
I understand that plc and pleva very rarely result in cutaneous lymphoma or Lymphomatoid Papulosis.

Quote
Lymphoproliferative disorders are conditions in which there excessive numbers of lymphocytes (T- and B-cells), including lymphoma (a malignant growth of lymphocytes). The idea that pityriasis lichenoides may be a lymphoproliferative disorder arises because lesions of patients with pityriasis lichenoides showed the presence of immune T-cells with specific CD30+ markers or antigens in PLEVA,and loss of CD7 antigens on T-cells in PLC.
These characteristics of T cells are indicators of lymphoproliferative disorders. The third theory behind the cause of pityriasis lichenoides is the detection of circulating immune complexes, aggregations ( A massing together or clustering of independent but similar units ) of antigens and antibodies deposited in the skin in some patients with the condition(As occurs with my own condition.)
The above quote, taken from this link below, proves most of my explanation and why you had an increase of T-cell count stillitchy, but maybe your doc was not anxious because the count was within the guide lines of this condition?
http://dermnetnz.org/scaly/pityriasis-lichenoides.html
I hope this helps with the understanding of these conditions.
Bunnie



Thank you all. Im not sure what Im going to do yet. Im having a hard time finding any "specialist". I will try and get an appointment with a nother derm, one who doesnt know Im broke, and I will print your post and the linked article so that I dont go in empty handed and get flustered as I tend to. :-\
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Sunday March 02, 2008, 11:11:04 AM
Hello Tetrifin, I think that is a good and the best idea, to first go to your GP with as much info on the condition as you can, and inform him too that it can affect the mouth, and eyes in some cases. Maybe then he can help you to see a good derm. Here are some links for you Tetrifin.
http://www.thedoctorsdoctor.com/Diseases/pleva.htm
http://www.emedicine.com/DERM/topic334.htm
regards Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: Happy1 on Thursday March 06, 2008, 02:48:53 AM
PEOPLE WITH PLC, PLS READ THIS. I HOPE ITS HELPFUL


Hi. i'm new here and i'm just responding to the most current post RE: PLC.

i was browsing on the internet last week and found this site. i didnt know there was so many PLC patients. i felt like i was the only one in this world or in california who has this condition.

ive had a skin condition since i was 13. it started off with a rash here and there and whiten skin. as months pass, it got worse or spread. went to the doc and he said i had eczema. he gave me topical creams to apply. the creams didnt work. as years pass, i decided to find my own way to fix myself. i read alot of info online regarding eczema and i realized i dont think i have eczema. as years pass again, i just gave up. i was always covered up and i avoided many things. it put a toll on my self esteem. going through with this in my teen years then in high school and so on was horrible. being a female and not able to wear what i want was a big blow.  i'm 30 now.

ive been misdiagnosed since i was 13.

i had the rash all over my body except my face. its worse on my arms and legs. the discoloration was all over as well but it was more noticable on my knees, and arms. i was always covered up or i wore large shirts to cover my arm up to my forearm. i didnt want people to ask questions or see my skin. i thought it was ugly to look at. it wasnt very attractive.

last year, i decided to see another doc. i was turning 30 so i wanted to do something to make myself feel like great so why not try and get my skin problem fix. the doc saw me and said maybe i have psoriasis. then he took a biopsy. i had to wait another week to find out the results. so i found out i have PLC.  in the past nothing worked cause i was getting treated or treating something that is not what its suppose to be. PLEASE MAKE SURE YOU ARE DIAGNOSED CORRECTLY. REQUEST A BIOPSY IF AVAILABLE.

my doc didnt assign no cream or anything. i did a light treatment, UVB narrowband. i started last year around june. i had to go to the clinic 3x a wk. the power level goes higher as you go. when i first started i was really skeptical. i wasnt positive about this treatment cause nothing else worked in the past. i was itchy for the 1st and a half months of treatment. i had a hard time sleeping at night. some patients didnt have this problem. i saw improvements around the second month cause i went 3x a wk. i started wearing short sleeves or sleeveless. as i was getting better i started going 2x a wk because it was becoming a hassle to go 3x a wk plus things come up. eventually it will reduce to 2x a wk to once a wk to once a month etc etc. right now i should be going 3x a wk but ive been going 2x a wk. please ask your doc about this treatment if its applicable for you and ask questions about it. my main concern of doing this was skin cancer. the exposure to UV and my age. since this is UVB its safer than getting ur light therapy out in the sun. pls ask your doc any questions or concerns.

i call my therapy my tanning session. it really looks like a tanning booth. its a booth u get into naked and theres all these bulbs. the higher joules u go the longer you stay in. they also make u wear tanning goggles to protect ur eyes. my face is usually covered. my body is the only thing exposed.  other patients who ive seen get this treatment are ppl with psoriasis.

this worked for me. i hope it works for you. i finally got a chance to wear my sexy blk dress. this upcoming spring and summer will be my first time to finally wear shorts and even a bathing suit. 

BEST WISHES!!!!!!!!!
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Thursday March 06, 2008, 09:01:55 PM
Hi.

My name is Shauna. I have a 3 year old son, Dylan, who has been diagnosed with Mucha Habermann disease. The last time we saw the dermatologist, he said it is looking like he has the chronic version of the disease. As I started researching, I found that is is sometimes called Pityriasis Lichenoides Chronica. The derm never called it that, but I am assuming that is what Dylan has. His lesions started appearing on December 19 2007. I remember because I thought it was chicken pox and took him to the pediatrician a week later. He initially had a few spots on his chest; then, within a week they had spread to his arms, legs, and butt. His spots were never itchy, and the ped had no idea so sent us to a dermatologist. The first one we saw did a biopsy and told me they suspected Langerhan's Cell Histiocytosis or Urticaria Pigmentosa. The biopsy came back negative for those. They told me it was a viral rash that would fade over time. Well, a month went by all the while the spots were increasing. So, we went for a 2nd opinion. That is when we were told he either had Gianotti Crosti or Mucha Habermann. He has now been on eurythimiasin (sp?) for over one month. I hate it. But, the spots are much lighter and seem to be fading. They are leaving a brown mark on his skin though. I am hoping that will fade.

Anyway, I know nothing about what we are dealing with and am hoping some of you can shed some light. I was told it is not an allergic thing. He is not allergic to anything but that his immune system is overreacting. Can this be bad. I mean, is the outlook going to be ok for my little guy?

Thanks,

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Thursday March 06, 2008, 09:16:53 PM
Hi!  My daughter was diagnosed with PLC (chronic version of PLEVA) five years ago.  They told me that it would take several years to run its course, and typically resolves by 7-10 years old, or perhaps into early puberty. (She is seven).  They said that childhood PLC is a little more predictable than adult PLC, because with adult PLC, it is a little harder to tell when it typically resolves.  Something physically happens with children leading up to puberty that causes them to outgrow these conditions (supposidly). 

I have never talked to anyone with PLC, and would be interested in hearing from anyone who has had any experience with this disorder. 

My daughters rash is mainly on her body, and sometimes it crops up around her mouth area.  Not to conspicuous, but it does sometimes flare up and become more obvious, partcularly if she uses certain fragrance soaps, fragrance creams, etc...her skin is definitely sensitive. 

Hope to hear from someone with PLC experiences!







Jahan


Jahan,

Hi. I have a son who is 3. He was diagnosed with Mucha Habermann last month. From my reading, I am assuming it is also called Pityriasis Lichenoides Chronica.

Since your daughter has had it for several years now, I am interested in learning about your experience with it. I feel right now at the end of my rope with Dylan. I am going crazy doing everything I can to make these bumps go away. I almost feel ashamed for people to see the bumps. They stare and ask questions. I know they are worried it is contagious. But, I hate having to explain to everyone what it is and why he has it. I don't know why. The derm keeps saying it just has to "burn itself out." But, he has no idea how long that could take. He thought it would have been gone by now. It has been going on since December 19th 2007. We moved from Indianpolis to Georgia into a new house. We all got sick with different illnesses, and Dylan then came down with these bumps all over, and they won't go away.

I am hoping to learn as much as I can about this and what to expect. I understand it has something to do with his immune system being out of whack. Isn't there something to fix that or speed it up to get rid of the disease?

Thanks,

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Friday March 07, 2008, 12:49:35 AM
Hello Shauna, I am so sincerely sorry your little one has this autoimmune disease.
Quote
I am hoping to learn as much as I can about this and what to expect. I understand it has something to do with his immune system being out of whack. Isn't there something to fix that or speed it up to get rid of the disease?
My post above 286, which Tetrifin has highlighted is what your little one has shauna , why he has it and what can be done about it. Mutated genes as yet cannot be repaired, although research is intensely trying to discover a drug, which will alter the function of the cells, - involved in carrying out the orders -from the "transcribed information" of these faulty genes. Because the information in those genes is faulty, as the immune response is mounted, that information taken by the cells is incorrect, and so each cell interacting as they do, in its turn,  is incorrect. Does that make sense?
People naturally want easy answers there simply are none, because you see shauna this is a genetic thing, your baby is predisposed to having an autoimmune disease, because of mutated genes. The doctor is quite right , almost all children with autoimmune skin disease revert back to normal at puberty. Only a small percentage have it ongoing after puberty, which hints at hormones being the instigator in stimulating these faulty genes. As a matter of fact researchers now also believe that hormones really may incite the predisposition that is there (and always will be), but only in a combination of mutated genes, regulating immune cells and hormones or other autoreactive cells of the immune system. Once these genes are stimulated, the "commands" are read, and malfunctioning of all the cells involved in that response naturally occur.
Sometimes these genetic faults can be stimulated by viruses, vaccines of course, drugs, but usually they are idiopathic. That means that they occur of self (idio=self)(pathic=disease) (auto=self), spontaneously and appear without obvious cause. Nothing you have done or what your baby has eaten , nothing at all that is non-self ie; outside of the body,  has caused this in your baby. He is genetically prone to this and it just takes a certain combination, of self factors, (rather like a combination number on a lock) to have set this predisposition off. Otherwise, the offending non-self cause would be detectable, in blood in particular, or biopsy Again the doctor is perfectly correct. All that can be done is to try and control the pathogenic result (which is the PLC) of the abnormal immune response to "self" tissues (autoimmune response)
Control is the goal of treatment for these conditions. That's what it is really, its more of a condition than a disease. It will as is usually the case with children, just burn itself out as he gets older. It could just last a couple of years, but throughout the time that Dylan has it manifesting, it will flare up and abate, so there will be times worse than others.
There are over 80 autoimmune diseases Shauna , but they all stem from the same underlying problem, mutated Genes, which in combination with other factors stimulates an immune response to self. Unfortunately, these conditions are unpredictable, there is no real pattern to them. There is also no cure. Children though usually have the best outcomes, because at puberty they go away and may never return(in fact they very rarely do in child cases) Adults have it for life, although even that can depend on the condition itself, there are exceptions to every rule.
Not the best of news I surely know Shauna, but at least now you know what you are dealing with. Your baby's skin of course will naturally be sensitive because it is already now traumatised by the result of this response, so  try to use everything that is simple, making sure his clothes are cotton, and comfy, without rough seams or collars. His skin will naturally flare and look bad , then look a little better, that is not due to anything else other than the natural waxing and waning of these conditions.
If it was something else, it could be tested, and of course a topical reaction from anything would make the skin very red too, more prominently so, and you could possibly actually see the two things going on in the skin , kind of a double rash if you like. Naturally such reactions make the condition look really bad, because of the condition already manifesting.
I hope this helps your understanding Shauna, it is difficult when you don't understand what the doctor is meaning or "why" he says things which seem innane, especially hard for a mother. If there is anything you can't understand please do not hesitate to ask.
fondly Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Friday March 07, 2008, 01:09:39 AM
Hello Shauna, I am so sincerely sorry your little one has this autoimmune disease.
Quote
I am hoping to learn as much as I can about this and what to expect. I understand it has something to do with his immune system being out of whack. Isn't there something to fix that or speed it up to get rid of the disease?
My post above 286, which Tetrifin has highlighted is what your little one has shauna , why he has it and what can be done about it. Mutated genes as yet cannot be repaired, although research is intensely trying to discover a drug, which will alter the function of the cells, - involved in carrying out the orders -from the "transcribed information" of these faulty genes. Because the information in those genes is faulty, as the immune response is mounted, that information taken by the cells is incorrect, and so each cell interacting as they do, in its turn,  is incorrect. Does that make sense?
People naturally want easy answers there simply are none, because you see shauna this is a genetic thing, your baby is predisposed to having an autoimmune disease, because of mutated genes. The doctor is quite right , almost all children with autoimmune skin disease revert back to normal at puberty. Only a small percentage have it ongoing after puberty, which hints at hormones being the instigator in stimulating these faulty genes. As a matter of fact researchers now also believe that hormones really may incite the predisposition that is there (and always will be), but only in a combination of mutated genes, regulating immune cells and hormones or other autoreactive cells of the immune system. Once these genes are stimulated, the "commands" are read, and malfunctioning of all the cells involved in that response naturally occur.
Sometimes these genetic faults can be stimulated by viruses, vaccines of course, drugs, but usually they are idiopathic. That means that they occur of self (idio=self)(pathic=disease) (auto=self), spontaneously and appear without obvious cause. Nothing you have done or what your baby has eaten , nothing at all that is non-self ie; outside of the body,  has caused this in your baby. He is genetically prone to this and it just takes a certain combination, of self factors, (rather like a combination number on a lock) to have set this predisposition off. Otherwise, the offending non-self cause would be detectable, in blood in particular, or biopsy Again the doctor is perfectly correct. All that can be done is to try and control the pathogenic result (which is the PLC) of the abnormal immune response to "self" tissues (autoimmune response)
Control is the goal of treatment for these conditions. That's what it is really, its more of a condition than a disease. It will as is usually the case with children, just burn itself out as he gets older. It could just last a couple of years, but throughout the time that Dylan has it manifesting, it will flare up and abate, so there will be times worse than others.
There are over 80 autoimmune diseases Shauna , but they all stem from the same underlying problem, mutated Genes, which in combination with other factors stimulates an immune response to self. Unfortunately, these conditions are unpredictable, there is no real pattern to them. There is also no cure. Children though usually have the best outcomes, because at puberty they go away and may never return(in fact they very rarely do in child cases) Adults have it for life, although even that can depend on the condition itself, there are exceptions to every rule.
Not the best of news I surely know Shauna, but at least now you know what you are dealing with. Your baby's skin of course will naturally be sensitive because it is already now traumatised by the result of this response, so  try to use everything that is simple, making sure his clothes are cotton, and comfy, without rough seams or collars. His skin will naturally flare and look bad , then look a little better, that is not due to anything else other than the natural waxing and waning of these conditions.
If it was something else, it could be tested, and of course a topical reaction from anything would make the skin very red too, more prominently so, and you could possibly actually see the two things going on in the skin , kind of a double rash if you like. Naturally such reactions make the condition look really bad, because of the condition already manifesting.
I hope this helps your understanding Shauna, it is difficult when you don't understand what the doctor is meaning or "why" he says things which seem innane, especially hard for a mother. If there is anything you can't understand please do not hesitate to ask.
fondly Bunnie

Bunnie,

Thank you so much for your in depth response. How do you know all of this? Are you a doctor?

I really do appreciate you taking the time to explain things to me. The dermatologist never went into so much detail about this. He never mentioned anything about autoimmune or the possibility that Dylan could have this thru puberty. I am a bit shocked at that. I mean, I have been praying this would fade for 3 months now only to learn that it could take years. It is difficult to see his skin like this constantly. Summer is coming too. He LOVES to swim. What are people going to think? I feel so bad for him.

As a last resort, I visited an alternative medicine doctor a few days ago with Dylan. He did some simple muscle testing on Dylan and told me that he believed the problem was with Dylan's kidneys; that his kidneys were not able to filter properly resulting in this "rash." He gave me some herbal supplements for him to take that are supposed to boost his immune system and rid the kidneys of toxins. Yes, sounds crazy. I was desperate and hoping I could find something to help the bumps disappear. Should I be leary of giving him supplements?

Thanks again,

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Friday March 07, 2008, 11:02:48 AM
Oh Shauna Don't please! It's piffle! The little chap has enough to cope with , without that!  I'm not a doctor No, but I have studied the subject in depth, and I have a life threatening autoimmune skin disease,which has never stopped since 1993. My specialists are leaders in research of autoimmune disease in the UK, and apart from my own knowledge I ask them LOADS of questions! It has nothing at all to do with nutrition, and I make no apologies for saying it. That is not to say one must not endeavour to eat well and healthily, your immune system like everywhere else needs good nutrition sleep , rest and exercise. These things take time. I also said that the mean duration in a child is two to three years, however these conditions are quite rare, therefore the time span is unpredictable. I also said that the vast majority will clear entirely before or at puberty, never to rear its ugly head again. It is different for adults, They can have long periods of remission, and short ones too. I went into remission for 18 years!
The very fact that this man has told you that is so wrong! The idiot! I'm spitting blood here! Doesn't he realise a little child is involved, and he is messing with these outdated concepts and attempting to get money from you for the privledge! Far from boosting the immune system, that is the whole problem in the first place, and the very last thing that needs doing! If he knew anything at all about this ,or how the immune system works, he would not have told you that, it is proof he's a quack. I don't know how they dare! The cells which produce an abnormal antibody to self, (an autoantibody) are failing to regulate the production of them, and cannot switch the process off. This is normally carried out by a regulating Tcell.
The cell (a plasma Bcell) which is producing this abnormal antibody, has received a misdirected command, to put it simply, due to a combination of one or two of possibly a viral infection, hormones , autoreactive immune cells and most importantly the genes which are mutated and hold the "wrong" information in the first place. How can a little child have toxic substances in his little body? Babies sometimes have these conditions. Please don't give him any supplements, because you are confusing the situation if you do. I presume blood samples were taken from Dylan at the derm's?
Anything at all amiss, lack of essential nutrients anything at all would show up in that full blood spec. If your son had a gluten (wheat intolerance) that too would be noted, anything at all suspicious.
What treatment if any was offerred by the derm? Sometimes some childhood cases remit on their own without intervention. There is a difference between Pleva and PLC although one is a variant (a phenotype)of the other. Pleva is "acute" which means of short duration, "Chronica" is long duration. Take this to your derm Shauna and ask him if I am right.
Quote
Can this be bad. I mean, is the outlook going to be ok for my little guy?
Of course he is going to be fine, I know that is so hard for you to grasp just yet, but you need to remain calm and assured that it will go in time. There will be times it looks worse than others, then look as if it is disappearing. That is one of the symptoms of autoimmune disease, they wax and wane in severity. I understand that eurythomycin has had good effects on child cases of PLC. It is a broad spec antibiotic with good antinflammatory effects.
I will send you some research reports via PM Shauna. I cannot send a link , because you need registration to access the files, even I cannot access some.
Again please ask if you need to understand anything that I have said.
Kind regards Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Friday March 07, 2008, 06:12:14 PM
Dear Mother with 3 year old.  (Sorry, can't remember the name, but something with "shaun".  My daughter is going to be 10 this summer.  As you know, she was 2 when she was diagnosed.  I am going to be blunt with you, from one mother to another.  When she was first diagnosed, I was extremely upset and wondering "why me?"  (Or, why not me, instead of her!).  Sun helps (he should swim to get UV exposure, but do put sunblock on just like anyone else).  After a bit, I learned to accept it, because I knew that it was going to be years.  Puberty is approaching, and I can only pray for clearing.  Sometimes, weeks go by and I don't give it much thought.  Winter is usually tougher for me, because it gets alot worse.  I moisturize with petroleum jelly, just after showers.  We live in the southeast (Florida) and PLC is so much better with just a little bit of sun.

A word of advice:  Do not let your son knows how much it bothers/worries you.  It will give him more of a complex.  I am very encouraging to my daughter that it is not a big deal, it will clear, etc... (even though inside, sometimes I feel like crying with frustration).  I am especially stressed because she is getting to that "self conscious " age.  I try to look on the bright side.  At least, our kids got it young, and don't/ will not  remember any different, until it clears.  Stay positive.  Again, some days (especially spring/summer/fall) I don't give it much thought.  But other days...We have to accept what we cannot change.  (Sorry for sounding like a cliche).  It will go.  It is just a matter of time.  THe docs I talked to said that they typically see about up to 90% or so of children clear by/at puberty.  Do I worry that my daughter won't clear?  Of course.  But in the mean time, I try to stay positive, if not for my sake, for hers.  Also, do not be afraid about the pool.  It is too complicated to tell people "PLC", so, when she first starts swimming in front of people, if they ask, I just say (and now she says) that it is like an eczema (it is, afterall, similar to a spotty eczema, and most every kid has heard about eczema).  So far, except for the occassional questions by school mates, I have found kids to be pretty accepting.  When your son gets older, you should talk with him about how to respond to people, because it is a natural question.  After a little swimming/sun (with sunblock!) it will improve substantially, you will be surprised.  Of course, it does come back.  You're not alone. 

Take care,

Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Friday March 07, 2008, 08:19:01 PM
Dear Mother with 3 year old.  (Sorry, can't remember the name, but something with "shaun".  My daughter is going to be 10 this summer.  As you know, she was 2 when she was diagnosed.  I am going to be blunt with you, from one mother to another.  When she was first diagnosed, I was extremely upset and wondering "why me?"  (Or, why not me, instead of her!).  Sun helps (he should swim to get UV exposure, but do put sunblock on just like anyone else).  After a bit, I learned to accept it, because I knew that it was going to be years.  Puberty is approaching, and I can only pray for clearing.  Sometimes, weeks go by and I don't give it much thought.  Winter is usually tougher for me, because it gets alot worse.  I moisturize with petroleum jelly, just after showers.  We live in the southeast (Florida) and PLC is so much better with just a little bit of sun.

A word of advice:  Do not let your son knows how much it bothers/worries you.  It will give him more of a complex.  I am very encouraging to my daughter that it is not a big deal, it will clear, etc... (even though inside, sometimes I feel like crying with frustration).  I am especially stressed because she is getting to that "self conscious " age.  I try to look on the bright side.  At least, our kids got it young, and don't/ will not  remember any different, until it clears.  Stay positive.  Again, some days (especially spring/summer/fall) I don't give it much thought.  But other days...We have to accept what we cannot change.  (Sorry for sounding like a cliche).  It will go.  It is just a matter of time.  THe docs I talked to said that they typically see about up to 90% or so of children clear by/at puberty.  Do I worry that my daughter won't clear?  Of course.  But in the mean time, I try to stay positive, if not for my sake, for hers.  Also, do not be afraid about the pool.  It is too complicated to tell people "PLC", so, when she first starts swimming in front of people, if they ask, I just say (and now she says) that it is like an eczema (it is, afterall, similar to a spotty eczema, and most every kid has heard about eczema).  So far, except for the occassional questions by school mates, I have found kids to be pretty accepting.  When your son gets older, you should talk with him about how to respond to people, because it is a natural question.  After a little swimming/sun (with sunblock!) it will improve substantially, you will be surprised.  Of course, it does come back.  You're not alone. 

Take care,



J

Thanks for responding. I am so sorry to hear that this has been going on with your daughter for so long. I had no idea it could really last that long. Dylan's pediatric derm keeps telling me that it should be gone soon. He said it is very rare when it lasts until puberty and usually clears before that, especially since Dylan is only 3.

I guess I just keep thinking and wondering what could have caused this. My husband and I are originally from Pennsylvania and moved to Cleveland soon after marrying. All of the kids were born there except for our 4th, who was just born in January. We now live in Georgia. We moved here about 5 months ago and immediately started experiencing a lot of sickness. All the kids got croup, strep, the flu, and then my husband had viral meningitis. It was right before he came down with that illness that Dylan started getting these spots. I thought they were chicken pox initially. Now I know differently. Right now I am in the process of having the air quality in the house checked. We moved into an older home and had previously always lived in a new home. We built both of our homes before moving here. We are currently renting and looking to build again. This house has a drive under garage, which lets a lot of air pollution up into the main living area. The landlord also has it sprayed for bugs every 3 months or so. So, there are a lot of pesticides we have been exposed to that we never had before. We never had to spray for bugs in the North. The lawn is also chemically treated. So, I have cut all that out - no more chemicals. I also threw out all my commercial cleaner and have started using natural cleaning products - vinegar, baking soda, washing soda, borax, lemon juice, etc. I also switched to all natural soaps and have started buying organics. Does any of this sound like it would help? Or, has your experience been that it will just be. There is absolutely nothing that can be done?

You mentioned you live in Florida. Do you also use chemical bug treatments?

So far, Dylan is totally fine with his "spots." They don't really bother him, although as they heal, he gets a bit itchy. It is an odd little condition though. He starts out with a little bump or bite looking mark which turns into a scab, fall off and leaves behind a flat widened out mark. Is that similar to your daughter?



Thanks for your insight.

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Friday March 07, 2008, 08:57:30 PM
Shauna, it won't. When it talks of enviromental factors, it means severe exposure to reactive chemicals, radiation, viruses, etc. none of your other kiddies have come down with anything in connection with those things have they? Or you and your husband for that matter?  Your husband had viral menengitis, did the derm say if it was connected? because if it was that virus would have been in Dylan, not to say of course that it wasn't another viral infection altogether. Do you see what I mean Shauna?
Your derm is right it does normally clear before puberty lasting for about 2-3 years in most cases, but not every case is the same. J has given you good advice, she has experienced it for herself, and I have told you the same. You have done nothing , your home enviroment has done nothing. If it were a viral infection that kicked this off the derm would have told you, especially if it was that or even some type of streptococcus. I have explained it as best I can, like I said there is no simple answer, and I know it is difficult to accept, but as J says, you learn to accept it. here is another link shauna which is saying what J and I have said.
http://www.women-health-guide.com/skin-disorders/pityriasis-lichenoides.htm
regards Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Saturday March 08, 2008, 01:58:28 AM
My son, Dylan, has PLC. I keep reading about it being an immune system thing. However, I talked to our pediatric derm about it yesterday, and he is saying it is a virus and that it has nothing to do with Dylan's immune system. He has been in practice for over 30 years and has seen this PLC or Mucha Habermann before. He is not just diagnosing out of a book. Dylan has had blood work done and a biopsy. The biopsy revealed that it is a virus. It did not confirm PLC; in fact, the biopsy report said it could be Gianotti Crosti. The derm gave us erythro to try with some positive effect, so decided to keep Dylan on it and gave us the diagnosis of Mucha Habermann.

In the meantime, I have taken Dylan to an alternative medicine doctor who specializes in chiropractic care and nutrition. He has given me some nutritional supplements for Dylan to boost his immune system and get his PH back to normal. He also told me to bathe him in epsom salt daily. It seems to be helping.

When Dylan first started developing spots, he had just gotten over a cold; he had a runny nose for about one month. When the runny nose cleared, he got spots. Plus, we had just moved from Indiana to Georgia away from his cousins and family. I was pregnant at the time with my 4th; my husband started a new job working long hours. So, maybe Dylan was stressed and his system was getting used to a totally new environment with more allergens, pesticides (we never sprayed for bugs in the north) etc.

Just curious to hear anyone's advice and experience with this skin condition.

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Saturday March 08, 2008, 02:13:04 AM
Hello again everyone, just wanted to give an update on my pleva.   I was diagnosed in November and decided to go the natural route since my dermatologist could not tell me much about this.  I went to a naturopath and was told I have a slow liver so she told me what I should do. I did a 1 day liver cleanse, took some vitamins and milk thistle (helps with various liver problems) and also did something called jmt technique (recommended by a friend)which is supposed to clean your body on a cellular level (this still seems real hokey pokey but hey I was desperate) and went to a tanning booth 3 times for 5 minutes each time
Well, the hundreds of red bumps I had all over are GONE.  I dont know which one of the above 3 things I did worked, or even if they went away on their own but I know the dermatologist didnt work.  He wanted me to take anti biotics for 3 months and apply a steroid cream all over in hopes that it would help but I didn not do it.  I would recommend to anyone on here to check into natural healing for this skin disorder, it won't hurt.


It is good to hear of someone else going to a naturopathy doc. I just took my 3 year old son to one last week. He was diagnosed with Mucha Habermann or PLEVA 1 1/2 months ago and has been on erythromycin since. The doc says if I take him off, the spots will all come back and be redder than ever.

On the recommendation of a friend, I took Dylan to this natural medicine doc. He said the problem resolved in Dylan's kidneys and gave him 3 supplements to take daily. One is Bucco, one is CXAPHA, the other CX5. He also wants me to bathe him in espom salt daily. I am trying to decide whether or not to take him off of erythro.

Looking forward to hearing your advice.

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Saturday March 08, 2008, 11:42:27 AM
Hi Shauna, well whichever way you go, please remember that some of these supplements interfere with the medicine itself, so really you shouldn't mix the treatments. Firstly you would never know which one worked and which didn't, and secondly the supplements can alter the affectiveness either by doubling the drugs effects or reducing the effects, or making it act differently. It also confuses the situation for the derm, he hasn't got a clear picture of what is happening if you are interefering with the treatment.
Your derm from what you have said, has been totally correct. He could have explained to you in more depth, to help you understand, but I have done that. As my derm (who writes the text books for derms, "Rooks" is one of them, every derm nearly has heard of Rooks volumes) says when we have talked about diets etc. "Clutching at straws". his very words.
It seems odd to me that one person is told it's the liver, and you kidney's!
Quote
I would recommend to anyone on here to check into natural healing for this skin disorder, it won't hurt.
Oh but it can! because there are some people who are in far more serious situation because they chose to go the alternative route, and meanwhile the condition was running out of control because it wasn't being controlled. One must remember that many conditions can be asymptomatic, meaning without symptoms, and because there are no severe symptoms they think their disease is under control, only to discover later that by the time real symptoms appear they are in a very serious situation indeed. Bullous disease in the eyes is a typical example. These conditions need an abrupt  "smack on the head" as soon as possible to prevent long term trauma to the skin, and the condition getting out of control.
These choices lie with us all, but before making such serious decisions, especially where children are concerned, then the only way one can make a well informed decision is to understand what is actually happening in the body.
I wish you every sincere success for Dylan.
kind regards Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Saturday March 08, 2008, 12:16:13 PM
Bunnie,

My derm told me that Dylan's condition has nothing to do with his immune system. (I called him yesterday with loads of questions after reading some of the info. you sent me). He said it is from an unknown cause and that it is a virus. It is taking a while to work out of Dylan's system. Now, from what I read online on my own and what you sent me, the consensus seems to be that it definitely does have something to do with the immune system. So, who do I believe? It does seem like the actual MD's do not have any real answers. I told him, well, his nurse that I was trying some holistic methods and giving him supplements. She did not think there would be a negative reaction with the erythro. She said that there are a lot of people who go there that decide to try an alternative route. The doc just always tell them that it won't work.

Anyway, I do have a lot to think about with regards to Dylan's health and I appreciate all the info. I am getting from this site - especially you.

What skin condition do you have? I know you said it was in remission for 18 years and is now back and is life threatening, right? So sorry to hear that. Let me know what you have though. I would be interested in hearing your story. And, do they know what caused your condition?

All the best,

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Saturday March 08, 2008, 06:48:27 PM
Hi Shauna, well there is a problem there with what your derm said because although it is not known for sure (from what I have read anyway) it certainly appears that it is, but stimulated by a virus. If you read
this link under causes, it explains that as you yourself have said.
There are many people who try and go down the alternative route, but to no avail, whereas some think it really has helped.
http://www.emedicine.com/DERM/topic334.htm
regards Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Saturday March 08, 2008, 07:38:14 PM
Hello Shauna,

When you went to see your derm, did he have a look at it and straight away tell that it was PLC? That happened with my derm, he seemed to know a lot about it and put me straight on the UVB treatment. Later we found it wasn't doing much and decided to take an alternative method. I started taking tetracycline, and stopped the UVB treatment, as I don't think you can get much sunlight with taking that antibiotic. A few months later my condition cleared slowly and I began to take warm showers again (happiest time of my life) lol because during my PLC my doctor told me to take cold showers, which was so hard, I dreaded getting out of bed in the morning because I knew I was just about to freeze to death in the cold winter shower hahaha. My method of surviving it was to wash myself in one minute and move around a lot. Anyway after it cleared, I had to see another derm about acne, he saw a scar on my arm and said you have a Mozzi bite there. And I'm like nah,, it's a scare from PLC. And he was just like what? And looked at me with massive confusion. I don't think he had even heard of PLC. Which makes me think of your derm, you had to get a biopsy to confirm right? Which demonstrates they are not so knowledgable about this disease. So I personally wouldn't rely on the accuracy of the information they tell you. People have done a lot of research on this and which you can freely access via the internet :D

It's good news that the spots are fading and getting lighter, this was the turning point for when I had it aswell. If this method is working don't go try other remedies to try and speed it up, you might slow it down. I am pretty sure Dylan will see the last of his spots in a month or so. I wish you and Dylan all the best and hope that you never have to hear of this gloomy disease again.

All the best, tc
Josh
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Saturday March 08, 2008, 09:09:06 PM
Josh,

Quote
When you went to see your derm, did he have a look at it and straight away tell that it was PLC?
The first derm we went to had no idea. She did a biopsy and told me there were two possibilities - Langerhan's Cell Histiocytosis and Urticaria Pigmentosa. Both were negative. The biopsy said it was a viral infection - possibly Gianotti Crosti. After that, I went to a different derm (one who has been in practice for 30 years). He looked at Dylan and said it was Gianotti Crosti or Mucha Habermann. He put him on erythro to see if it had any effect on the lesions. They did start to fade and flatten, so Dylan has been on that antibiotic for about 2 months now. I hate that. But, the derm said if I stop treatment, all the redness and bumps will reappear. Does that sound right?

Quote
I began to take warm showers again (happiest time of my life) lol because during my PLC my doctor told me to take cold showers

I do notice that Dylan looks worse after a warm bath. But, I cannot give a 3 year old cold baths. So, I am not sure what to do about that.

Quote
It's good news that the spots are fading and getting lighter, this was the turning point for when I had it aswell.

How long before all of your spots were completely clear? Do you have any scarring? I just hope my little guy will get back to normal soon and will not suffer any ill effects from this later in life. Did your derm say it was an immune system disorder? Just wondering because my derm keeps telling me it is a virus and that Dylan's immune system is fine.

Thanks for the information. I will take all I can get.

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Saturday March 08, 2008, 09:25:37 PM
Several months say 3 or 4 , after I started taking the antibiotic my skin was virtually clear apart from a few heavy scabs I had picked off :P

The spots will all  eventually disappear, I still have a spot here and there but this new derm just say it's a mole. I'll just take his word for it lol.

My derm did not explain the disease to me, he just mentioned that it has no time frame, it could last months or even years.
I also thought it was chicken pox when it first started spreading on me. Which was weird because I already had it as a kid, so I saw my GP and he referred me to a derm and yeah.

You shouldn't worry about the biochemistry behind this disease as it is irrelevant, just take care of your son and listen to your doctors instructions.

Regards,
Josh
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Saturday March 08, 2008, 10:54:44 PM
Hello again Shauna,
I'm afraid I must disagree totally with this PLc4,Sorry!
Quote
You shouldn't worry about the biochemistry behind this disease as it is irrelevant,
It is extremely relevent! A little boy is involved, and his mother is having to make well informed decisions about the treatment and what she feels is best for her son. The more Shauna understands about this, the better she will be able to make the right decision, and how to care for Dylan, so as not to exascerbate the situation. If Shauna can talk about this with her derm on HIS level, he will be more keen to explain the situation. If he cannot then there is something wrong, because we can all read about these diseases and read what treatment is offerred usually, so how does Shauna know that he really knows about this disease? This is one of the problems of having a health system where it is a commercial enterprise the agenda becomes money.
Anyway Shauna , another link, http://www.emedicine.com/PED/topic2555.htm
Quote
Pathophysiology
The most likely explanation for the exanthem is a local type IV hypersensitivity reaction to the offending viral or bacterial antigen within the dermis. This is based on the immunohistochemical characterization of the cutaneous inflammatory infiltrate Findings on direct immunofluorescence examination of the skin are always negative Electron microscopy has never revealed virus particles that suggested a reactive process other than an autoimmune phenomenon or direct infection of the skin. Inciting factors include various viral and bacterial infections, as well as recent immunizations. The rarity of GCS in adults suggests lifelong immunity to a common viral triggering agent. GCS is more common among children with atopic dermatitis, suggesting an immune mechanism. However, more information is needed in order to define the precise mechanism involved.
Please note the bits...
1) Most Likely
2)hypersensitivity reaction to the offending viral or bacterial antigen within the dermis.(lower deeper layers of skin)
3)based on the immunohistochemical characterization of the cutaneous inflammatory infiltrate
(this is is a method of analyzing and identifying cell types based on the binding of antibodies to specific components (antigens) of the cell.)The inflammatory infiltrate is the cells involved in the inflammatory response which is the body's first line of defence.
4)direct immunofluorescence examination of the skin are always negative Electron microscopy has never revealed virus particles that suggested a reactive process other than an autoimmune phenomenon or direct infection of the skin. Immunofluorescence and Electron microscopy is a very special and surest way of identifying  anything wrong in or affecting the skin.
5) Inciting factors include various viral and bacterial infections, as well as recent immunizations.
6) The rarity of GCS in adults suggests lifelong immunity to a common viral triggering agent. GCS is more common among children with atopic dermatitis, suggesting an immune mechanism.
This is quite obviously suggesting that there is possibly a genetic predisposition to allergies. In other words an autoimmunity to a specific viral allergy in the case of plc, or mucha H. or GC. I did a post about this somewhere I will try and find it.
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Saturday March 08, 2008, 11:16:40 PM
Just a few more quotes Shauna concerning Atopy.
Quote
Although the predisposition for atopic dermatitis is genetically determined, several trigger factors may influence the outbreak of skin changes
Quote
Endogenous factors - Atopy (endogenous means produced or growing from within.)
Atopy is an inherited predisposition which causes a tendency to suffer from one or more of the following “atopic diseases”: allergic asthma, allergic rhino-conjunctivitis and atopic dermatitis. The diagnosis of “atopy” is not based on one single distinctive clinical feature or laboratory test, but rather results from a combination of patient and family history and clinical findings.
Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Sunday March 09, 2008, 12:05:21 AM
Bunnie,

Shauna is not a Doctor. She cannot make well informed decisions on the basis of what she "thinks" or some site "tells her" a possible treatment is, or write her own perscriptions. Nor can you.

What is the purpose of overloading shauna with a lot of useless information? So she can relate to her doctor and tell him how to run his job?

I don't disagree with the aspect of researching through possible treatments of PLC, but you must discriminate what is feasible in this situation.

Trial and error is the best method for Shauna, as she can see what works and doesn't work, Erythromycin seems to be working for her.

Josh
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Sunday March 09, 2008, 12:52:48 AM
Josh,

Quote
Shauna is not a Doctor. She cannot make well informed decisions on the basis of what she "thinks" or some site "tells her" a possible treatment is, or write her own perscriptions. Nor can you.

When Bunnie writes of me making informed decisions regarding Dylan, I think she is referring to me trying out the "natural medicine" route with the naturopathy doc. He prescribed some supplements for me to give Dylan to boost his immune system, correct PH, and help him rid his body of toxins. I have been giving them to him while still keeping him on erythro. I am wondering whether or not to keep doing that though. I feel uncomfortable keeping him on the erythro but am beginning to feel more uncomfortable giving him "natural" supplements that I know absolutely nothing about.

How long have you been PLC free? Do your docs think it will ever return? And, I agree that maybe the derm did not fill me in on everything so as not to burden me with an overload of information that frankly, I would not understand anyway.

Thanks,

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Sunday March 09, 2008, 01:05:20 AM
Quote
This is one of the problems of having a health system where it is a commercial enterprise the agenda becomes money.


Bunnie,

I very much like our healthcare system. For example, as soon as Dylan presented with spots, I took him to the doctor. I then took him to a dermatologist of my choice and than another for a second opinion. I did not have to wait to get in anywhere or wait until someone gave me the ok that he was sick enough to be seen. From what I read of your situation, you had to wait until someone actually believed you were sick before you could be seen. I mean, it sounds great that healthcare is free to all, but I do not believe it benefits everyone. My husband works with a guy originally from Canada. His father and sister are both doctors there. He said he gets great care because of his family, not the system. He also said if her were ever to get very ill, he would want to be here in the states to get well. So, I do not believe it is all about the money. From my experience, the docs care about their patients. I do trust Dylan's pediatrician and dermatologist. Maybe the derm did not give me ALL the facts so as not to burden me, not because he did not have them.

And, while I appreciate all of the information you give me; I must admit, I do not understand much of it. It all sort of runs together after a while.

I will say that I am having second thoughts about the nutritional supplements though. I just want to do what is best for Dylan and not upset his body anymore than it already is. Although, I do HATE having him on erythro for so long. That cannot be good for him either. I wish I had a magic ball to tell me what to do and what not to do.

And, as for genetic predisposition, neither my husband nor I have any skin conditions. And, I have 3 other children that are symptomless so far. All I can think of is that my mother had pityriasis rosea a while back. It went away with treatment and has never returned. And, Mark, my husband was diagnosed with psoriasis 2 years ago. But again, it was treated, went away and has never returned.

Must go. I have a baby to feed.

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Sunday March 09, 2008, 09:42:53 AM
Hi Shauna I am pleased that you are happy with the care you are getting that is the most important thing, and it is true our waiting lists are long, but the government now addresses that.
Quote
And, as for genetic predisposition, neither my husband nor I have any skin conditions. And, I have 3 other children that are symptomless so far. All I can think of is that my mother had pityriasis rosea a while back. It went away with treatment and has never returned. And, Mark, my husband was diagnosed with psoriasis 2 years ago. But again, it was treated, went away and has never returned.
There you see Shauna you do have the predisposition, on both sides of your family. Your mother with an Atopic condition and your husband diagnosed with psoriasis! Psoriasis is not just a predisposition but also carries an hereditary gene to the disease itself. Not all members of a family get autoimmune conditions manifesting, and it doesn't have to be in the last two generations even. For example nobody at all had an autoimmune disease as far back as my great grandparents, so somebody before them must have had. Only myself, and my niece quite recently diagnosed with an entirely different condition. The disease does not have to be the same, and a person can have more than one themselves. Atopy runs in families, and can be autoimmune also, certainly my siblings all suffer with a dermatitis sometimes, on the hands, but it goes away.
For what its worth I think you are being wise to reconsider, because if there has been an improvement why rock the boat?
Regards Bunnie
Plc
Quote
Shauna is not a Doctor. She cannot make well informed decisions on the basis of what she "thinks" or some site "tells her" a possible treatment is, or write her own perscriptions. Nor can you.
No that is true, but far from telling anybody their job, I do feel in fact know from my own experience that it is better to understand than not, simply that and nothing more. If you understand you don't do things which may exascerbate the situation that is all, and you also understand why you have the condition and why some of us are taking drugs which have serious side effects. I personally would want to understand why my little boy had to have an antibiotic, erythromycin, and the benefits of it. I am speaking personally, my information was not meant to burden anybody, and if it has that was not my intention at all. I used to find it distressing when I couldn't understand what my derm was on about, and so many conflicting opinions. I was trying to help out on that score.
Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Wednesday March 12, 2008, 03:29:02 PM
Fellow PLC/PLEVA's

Just another interesting paper I read.  Apparently, some docs are having success treating PLEVA/PLC with azithromycin (zithromax).  Do a search on google, and you can see the paper for yourself.  It just came out in the past month or so, it appears, from a US dermatological journal.  I plan to ask my derm about it when I bring my daughter there this summer.  Anyone else heard of this?

J
Title: Re: Pityriasis Lichenoides Chronica
Post by: mumfuzzy on Friday March 14, 2008, 02:50:28 AM
Hi,

My daughter Brittany has been diagnosis about 4 years ago.  She been drink aloe Vera juice, flaxseed oil, immune booster, xango(mangosteen juice) it has clear it up.  She on antibiotic for 2 years and it did not help but she been drink all natural herbs and xango about 2 months ago.  It has help her skin clearing up, she is now happy to wear short sleeve shirt. If you would more info check my website,  I have tried everything this works for her.

link removed
Title: Re: Pityriasis Lichenoides Chronica
Post by: mumfuzzy on Friday March 14, 2008, 03:18:50 AM
Also you can use CANDIDA herbal which clear up yeast cause by infections people takes to much antibiotic
Title: Re: Pityriasis Lichenoides Chronica
Post by: edwardsm on Friday March 14, 2008, 06:15:59 PM
My son (14.5 yrs) has just been diagnosed following a biopsy (we are in UK and its been 2 months since the outbreak of spots - I soon asked to see a specialist when they didn't disappear after a month and to be fair she put Pity..Lich on the form even before the results came back. Our GP diagnosed Psyriosis but 30 minutes on internet told me it wasn't. How do they train these people?

Initially I was worried about HSP / Vasculitis and was relieved when all the bloods Urine and biopsy confirmed otherwise. The specialist is quite relaxed and tell us its self limiting and should burn itself out - but having read some of the threads here I am now a bit more concerned. She has told us to wait 2 months and go back and if its no better she may suggest the ultra violet treatment. The spots are 100% arms and legs and its winter so he's covered up - but he doesn't seem that bothered as he feels 100% otherwise. He has no itching or puss or anything like that.

I have a few questions if anyone can shed light (Bunnie you seem to be the resident expert!)


Should we wait or ask for treatment right away?

Can you tell if its PLC or Pleva from the Biopsy?(everything points to PLC but specialist didn't really specify a difference)

My son just had his "jabs" - I'm now worried this will stimulate his immune system and make the condition worse any body got experience? (My wife and son both knew they were coming up but neither thought to ask the specialist if they should go ahead!! First I knew they were done!! (they do them in school in UK)

Regarding the Bromelain - I read this report too and I 've bought some as they seem pretty harmless otherwise. I might even take them myself for my sinuses.

I've also read about this dying out in puberty - but my son is just at the start of puberty! any comments on this? I am worried that this could mean he'll get it for the long term.

We didn't do anything specific about hot water / special soaps (dove normally) - is this to relieve symptoms of itchyness or do you think it gets rid of the spots?

Anyway feedback gratefully received and I'll be sure to give some feedback of how we get on..

Martin...



Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Friday March 14, 2008, 07:30:49 PM
Hello Edwardsm, welcome!
Quote
I have a few questions if anyone can shed light (Bunnie you seem to be the resident expert!)
Please don't say that! I am sorry if I personally gave that impression, it is not my intention, nor is it true by a long chalk. I simply am very interested in autoimmunity, and i endeavour to get it all checked, by medical friends or my derm etc. I am very careful that what I say is, as far as possible correct.
I mainly talk about the underlying predisposition which we share, in having an autoimmune disease, or Atopy. I do not know necessarily about each specific disease, which is the pathogenic result of this abnormal response. There are over 80 of them!
Quote
How do they train these people?
A GP is not a skin specialist. He cannot diagnose skin conditions like these effectively.
Maybe it was the jabs. Certainly vaccines can trigger this response into action in the first instance, but the predisposition is in the genes. If your son is already presenting with this, then it can't be the jabs. It could be because your son has reached puberty , and a release of hormones has triggered it, who knows?
see this link  http://dermnetnz.org/scaly/pityriasis-lichenoides.html
I think someone else who has the condition may shed more light on the actual manifestation differences, although this link does mention them. Usually in biopsy the area or layers of the skin involved and the presence of certain immune cells and the antibody, all determine which disease it is, or its phenotypes. (subclasses). If there is anything in the link. or any link you do not understand , I may can help. Regards Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Friday March 14, 2008, 08:02:48 PM
Edward,

Hi. My son Dylan also has PLC or PLEVA. His lesions appeared the past December '07. He was originally diagnosed with either Langerhan's Cells Histiocytosis or Urticaria Pigmentosa. Thank God those results came back negative. His biopsy simply said it was a virus - possibly Gianotti Crosti. When I took these results for a second opinion to a more knowledgeable dermatologist, he said he thought it was Mucha Habermann and confirmed this after 1 month on erythromycin. The lesions began to fade, so that is how he made this diagnosis. Now, he has been on this antibiotic for about 6 weeks. The spots look better but are still there.

My derm said the only treatment for a child is erythromycin. He told me that Dylan's immune system is fine and that this disease will burn itself out; but, it could take months - maybe up to one year. He also gave me "prax" lotion for the dryness and itchiness and said to let him play outside in the sun (with sunscreen, of course) as sunlight is supposed to really help this disease clear.

As of now, Dylan still looks pretty horrible. I did read a very hopefull ordeal about this disease from a woman who posts under the name of MJC. Her name is Deidre. If you can find her posts, you need to read her story. Her son had this disease for only 3 months. It burned itself out with their regimin of erythromycin, hydrocortisone, and light therapy.

Good luck.

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: edwardsm on Saturday March 15, 2008, 02:57:03 PM
Hi shauna / Bunnie,

Thanks for the feedback.

Shauna are you in the UK? Did your doctor immediately prescribe erythromycin  I am wondering if I should ask for some medication because right noe we are doing nothing. Its hard to tell if my sons spots are getting worse because he's 14 and hes always covered up and he hates the fuss if I ask!

Martin

Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Saturday March 15, 2008, 04:23:42 PM
Martin,

No. I am in the states. I live in Georgia. Luckily for us, it is getting warm here, and I can start putting Dylan in shorts and T-shirts and letting him out in the sun. I don't think most derm's recommend the light treatments due to the concern with skin cancer later in life. My derm is completely opposed to tanning beds, and I think the lights treatments fall in the same category.

Yes, the derm we are with now prescribed erythro right away even though he was not sure if it was Gianotti Crosti or Mucha Habermann. From the pic's I pulled up on-line, I thought it was Mucha right away. And, since the erythro seemed to help with the inflammation, he determined it was Mucha as well.

I would ask to start erythro or some type of accepted antibiotic to treat the inflammation, since that is what it is for, not for an infection. If your derm is certain it is PLEVA or PLC, I would think he would have started some type of treatment. It seems that the "disease" spreads rapidly, so you have to treat rapidly to get hold of it.

Maybe ask about the light treatments too since your son is older. Mine is only 3. Also, my derm gave us "prax" lotion for any dryness and itchiness. Hydrocortisone has been shown to irritate it. Plus, long term use of a steriod lotion is supposedly not so good.

Hope that helps.

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Saturday March 15, 2008, 04:34:17 PM
Bunnie,

Hi again. I was wondering if you knew anything about the long term effects for a child of being on antibiotics for an extended period. I am following the advice of my derm and keeping Dylan on erythro. I am just wondering what that could mean for him in the future.

And, I have stopped the supplements I was giving him. I was too concerned about giving him too much at once. I know the supplements are "natural," but they alter how the body works just like synthetic drugs. So, if the erythro does not do the trick, I may try something later. But, for now, I am trying to be patient and just follow dr's orders and let this thing burn itself out as he keeps saying it will. He tells me summer will be great for Dylan because it will help heal the marks left from the lesions.

Also, I am praying for him everyday. I pray everyday anyway but have been diligent about it and asking God to give me peace that I am giving the right treatment to Dylan and that He will let this work and heal him. I don't know if you pray, but if so, could you add Dylan to your prayers, and we will add you to ours too.

Thanks,

SHauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Saturday March 15, 2008, 11:04:43 PM
Hello Shauna,
It is of course worrying for our little ones to be on antibiotics and we know of some little ones on here who have been on very serious drugs over a long period of time. They are moniterd well, and cope well. For what it is worth Shauna I personally feel you are doing the right thing. The antinflammatory may just bang it on the head, and I'm sure your derm will be monitoring Dylan closely, and will of course stop it as soon as may be. I suspect he needs to see a significant improvement lasting over a significant period of time, before he reduces the dose or stops it. The literature speaks so well of Erythromycin switching this condition off, and there doesn't seem to be any adverse reports concerning side effects.
The dose will be in relation to Dylan's age, etc.
Supplements confuse the situation, according to all the specialists involved regarding my condition. Sometimes they can have an affect on the drug itself, either making it less affective or increasing its capacity. As my docs always say , they want a clear picture of my blood specs. It is on that spec that treatment is based, specific to the individual. I understand from what I have read that  sunlight is very good indeed for pleva and PLC. Sunlight is very good for some of these manifesting conditions, and for some like my own  it's one of the things I am told to avoid. That is typical of many skin conditions, it can be really good for some and just the opposite for others.
Of course Dylan will be in my prayers and yourself. I read once before I lost my sight, To lay the load that wearied me at His Feet. That is an act of Faith. Mentally hand it over to Him, ask it always, whatever you want, "in Jesus's Name" that Dylan, and all the other children on here be healed. There, I have asked it. I pray for your peace, and if it is of any comfort at all, you are doing the right thing, of that I am certain.
" Verily, Verily, I say unto you, whatever ye shall ask The Father IN MY NAME, He will give it you"
John 16:23
Regards Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Sunday March 16, 2008, 01:37:17 AM
Bunnie,

Thank you. It is of much comfort to know you think I am doing the right thing and to know you are praying for me and my Dylan. You seem very knowledgeable and must speak often to your doc's and ask them loads of questions. You do sound like you know what you are talking about. Thanks for the advice, prayers, and the verse. I wish you lived closer so I could give you a hug.

Thanks,

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Friday March 21, 2008, 06:51:45 PM
Hi PLEVA and PLC'ers

Just giving an update on Dylan.

I took him off all supplements and decided to stick with the derm on this. He is still taking the erythro twice daily and getting plenty of sunshine on nice days. His lesions are all beginning to fade with only a few "active" ones right now. I still notice some new ones occasionally but am praying they all go away soon. The derm keeps assuring me that this is a self-limiting condition and that it should be completely gone very soon. I am trusting him and continuing Dylan's treatment.

I am using all natural and organic products on his skin - bathing, lotion, sunscreen, etc. I don't know if that is helping, but he is looking much better.

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: spottedchick on Saturday March 22, 2008, 07:45:15 AM
Hi everyone I have been trying to read through this thread, I have been a member for a while but this is my first post!

I was diagnosed with PLC about 3 years ago, I am 29 years old now, but have had the spots for about 6 years, I have never been able to get used to them, and in the past year the spots have been appearing on my face, specifically on my eyelids - after having this condition for so long it just seems to be getting worse and Im getting more and more down about it. I would love to wear short sleeves in summer but I look like a leper. Im just really down about it. Ive tried antibiotics, creams etc but nothing works, they say it will go away eventually but its been 6 years maybe more, (Ive lost count) and I dont see an end to this  :'(
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Saturday March 22, 2008, 08:25:23 AM
Hi everyone I have been trying to read through this thread, I have been a member for a while but this is my first post!

I was diagnosed with PLC about 3 years ago, I am 29 years old now, but have had the spots for about 6 years, I have never been able to get used to them, and in the past year the spots have been appearing on my face, specifically on my eyelids - after having this condition for so long it just seems to be getting worse and Im getting more and more down about it. I would love to wear short sleeves in summer but I look like a leper. Im just really down about it. Ive tried antibiotics, creams etc but nothing works, they say it will go away eventually but its been 6 years maybe more, (Ive lost count) and I dont see an end to this  :'(

Hey Spottedchick,

6 years is such a long time I don't know how you've survived all that time. But you have. and thats the main thing. You must be pretty strong to be able to keep going on. I know how depressing it can be, and how self-conscious you feel when people see the spots. But if you accept it that the spots are apart of you then eventually you will not even notice you have them anymore and will not give a damn what other people think. You are down because you are letting yourself be down. The only limit to happiness in this world is what you set it at. I wish you all the best and I hope you forget about your spots and hence they forget about you.

Happy easter,
Josh
Title: Re: Pityriasis Lichenoides Chronica
Post by: spottedchick on Saturday March 22, 2008, 08:53:38 AM
Hi Josh, thanks for your reply. You are so right and I wish I could except them! Maybe I will in time because I dont see them going away anytime soon.

Happy Easter to you too  :)
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Sunday March 23, 2008, 06:04:59 PM
Spottedchick,

I am sorry to hear how down you are. I cannot say I personally know how you feel since it is my 3 year old son suffering from PLC. But, as a mother, I know how I feel seeing my boy covered in spots. It is heartbreaking. But, I have learned to look past them and see him for what he is - an adorable, loveable, sweet little boy. And, I have realized that it looks much worse to me than it does to other people. I guess it is a little like when I had acne in high school. I always thought I looked horrible, when others barely noticed.

I wish I had some amazing advice for you about how to get over your depression or how to get rid of the disease. I have neither. I would suggest however finding a specialist who has dealt with this disease before and not just looked at it in a book. The derm I take Dylan to has treated this condition before and seen it disappear. He assures me that with the erythromycin and light exposure (natural sunlight outside); Dylan's spots will fade. He says the disease will eventually burn itself out and never return. Now, this is the case for most children. I do not know how the disease plays itself out in adults. But, if you are not taking any meds right now, I would suggest seeing a nutritionist or a doctor of naturopathy. They will probably give you some liver cleanses and suggest some other supplements to clean out your system. It could not hurt especially if you are not on any meds. If you are, I would wait on that. I read a few people trying those methods with success.

Good luck,

Shauna (Dylan's mom)
Title: Re: Pityriasis Lichenoides Chronica
Post by: spottedchick on Monday March 24, 2008, 07:23:50 AM
Hi Shauna, thanks so much for your reply. I have a 3 year old daughter and cant imagine what I would feel like if she had this disease, but your little boy is gorgeous! I do hope his passes quickly and hopefully it will be gone quickly and he wont even remember having it!

thanks for your advice, I did try erythromycin and it just made me feel sick so I stopped taking it. I have heard about sunlight helping, its just getting out in the sun in the first place thats the difficult bit as Im self conscious about my skin ::)

I had a biopsy to determine the disease but the doctors didnt really know much about it, so I was given some cream and sent on my way. I was offered light treatment but turned it down as I had a little baby at the time and was a single parent so couldnt really go three times a week...

Anyway sorry for rambling it is so good to find others with this condition, I searched all over the internet and eventually found this place!

xxx
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Monday March 24, 2008, 10:50:08 AM
Hello Spottedchick, just to add you needn't have felt nauseaus with the erythromycin, as the doc could have given you a stomach med to counteract those symptoms of having tummy upsets and feeling sickly. I understand with most people they feel like that in the beginning, but then things settle down and those symptoms go away, (often the case with any antibiotic),  but there are preperations to protect you from those side effects. I mention this should you have a bad outbreak and wish to reconsider trying the Erythro. again, telling the doc of the symptoms of nausea that you had previously.
Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Tuesday March 25, 2008, 03:04:32 PM
Quote
I have a 3 year old daughter and cant imagine what I would feel like if she had this disease, but your little boy is gorgeous! I do hope his passes quickly and hopefully it will be gone quickly and he wont even remember having it!
Thanks. I think he is pretty cute myself!! That is what is so frustrating about this disease - it really does a number on one's skin. But, it is fading with the sun exposure. I also pray that it will go away soon never to return. And, he will never remember having it.

Quote
I did try erythromycin and it just made me feel sick so I stopped taking it. I have heard about sunlight helping, its just getting out in the sun in the first place thats the difficult bit as Im self conscious about my skin ::)

Yeah, you might do what Bunnie suggested - trying the erythro with some anti-nausea medicine. So far, Dylan has not complained about an upset stomach, and he has been taking it for almost 2 months now. It sounds like such a long time, but the derm assures me that he will be fine. There have been no adverse reactions to it in any reports. So, hopefully it will do the trick for Dylan and rid his system of this. I have learned to be patient with this. I was upset after 1 week of being on the erythro that he was not clear. But, it just takes time. I guess it is a pretty stubborn disease.

And, as for the sunlight. I have noticed a tremendous improvement since Dylan has been out in the sun. If you can just sit out in your yard with shorts and a T-shirt, that would probably help a lot. Then, once those areas start clearing, you might feel better about getting out in your swim suit at the pool. The sunlight really does help a lot. Also, try using some lotion to soften your skin. I noticed Dylan's skin was so dry once the spots started fading and crusting over. It made him itchy. So, I use "prax" lotion for the itch and an all natural lotion called "California Baby." You can find it at Whole Foods or any health food store.

I hope that helps and that you can find something to help your skin.

Best of luck,

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: spottedchick on Wednesday March 26, 2008, 07:55:45 AM
Bunnie, thank you for that info I was never offered anything to counteract the sickness just was told to stop taking them  >:(

I would like to try them again or maybe the antibiotic beginning with T? cant remember the name i heard about it in this thread.

Youre right Shauna its beyond stubborn! Ive always wanted a big tattoo on my arm, so I might be having it done friday if he can fit me in. That way I might get myself to show my arms off, eek!
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Wednesday March 26, 2008, 09:11:39 AM
Was it Tetracycline? There are a few types of tetracyclines, take a look at this link...
http://en.wikipedia.org/wiki/Tetracycline_antibiotics#Examples_of_tetracyclines
note it says that it works by inhibiting gene transcription, which one suspects inhibits the malfunctioning process from occuring, due to the mal-information  within the gene DNA, (a mutated gene)
Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: galpal on Wednesday March 26, 2008, 09:57:27 PM
Hello All,

It is sad to be posting here again.  My daughter, 7, has had another bad outbreak of spots.  So much for self-limiting.  We do live in the northeast and winter is almost over.  My main comfort is that soon I will have her in a bikini.  Last summer, the spots went away completely.  Also, her doc at Boston Children's agrees that the effects of the sun have a lingering impact.  She didn't get her first new spot until November.  That was almost 6 months without the dang things.  Then a few more little ones came.  Now it is late March and they are big, bad ones again.  Also, strange places like eyelids, under the chin, under her bangs....

The Erythro didn't help her but supposedly it helps in 60 plus percent of children.  I just use Aveeno for the itchiness at night, epson in her bath and the clear laundry detergent.  I treat the sores with mupricin (sp?) which definitely improves the healing process but doesn't prevent anything.  Also, she was getting chicken pox like scars before we used the topical cream.  Now she just has the discoloration and white spots. 

Well, I do believe this thing will wax and wane over the years but we are used to it and I make no fuss over it at all.  Also, I feel lucky that she's a happy little girl who will want to play in the sun anyways and that is exactly what will send it into remission again. 

  I was so low last year at this time.  After my few visits to Children's Hospital, I know that there is so much worse out there.  Not that other people's misfortune makes me feel better, rather it makes me realize that life just isn't perfect and I'm amazed by the strength and positive outlook of others and I hope to give that to my daughter.

Good luck everyone.

Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Wednesday March 26, 2008, 11:56:48 PM
Galpal,

Sorry to hear about your daughter. It seems like you all are ok with it - or as ok as you can be. How long has she had it?

My son Dylan, 3, has had it since this past December. He has been on erythro for about 2 months now. It seems to help a little but not enough to make me want to keep him on it for much longer. I think the sun is helping more than anything. The spots were almost all clear a few days ago but look redder again today. And, I think I have seen a few new ones. It makes me crazy and makes me second guess everything I give him to eat and drink. The derm assures me it does not have anything to do with food but I can't help thinking it does.

I really need to get him out as much as I can in shorts and T-shirts. As soon as the pool opens, we will be there too. I don't even care what the other parents think. Well, I do but I guess I will just have to explain to everything that he is not contagious. Oh, this disease is really frustrating.

Any advice you have to offer would be appreciated.

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: spottedchick on Thursday March 27, 2008, 09:51:18 AM
Was it Tetracycline? There are a few types of tetracyclines, take a look at this link...
http://en.wikipedia.org/wiki/Tetracycline_antibiotics#Examples_of_tetracyclines
note it says that it works by inhibiting gene transcription, which one suspects inhibits the malfunctioning process from occuring, due to the mal-information  within the gene DNA, (a mutated gene)
Bunnie

Yes thats the one Bunnie, thanks for the link :)
Title: Re: Pityriasis Lichenoides Chronica
Post by: galpal on Thursday March 27, 2008, 11:43:32 PM
Hi Shauna,

I was so sad when I read about your little boy.  I remember the horror of last year when my daughter was covered with the sores.  I think anything that you do to strengthen his overall health can only help.  I know there has been lots of discussion on this site about DNA and autoimmune but that is no reason to throw your hands into the air and give up.  After all, there are MANY autoimmune diseases that are treated.  We don't give up on people with Asthma, Diabetes etc...

I absolutely believe there is a trigger to this disease.  Whether it is viral or bacterial, I don't know.  I suspect my daughter had an untreated strep infection.  She had a very sick winter last year.  I found out months after her initial outbreak that two other children in her first grade class had some sort of strep induced eczema and BOTH were receiving light treatments.  Way too much of a coincidence. 

Now, I am germ crazy.  If she has a sore throat, I don't wait for the high temp.  She is in for a throat swab the next day.  If she is sick with a cold and is getting worse then I don't buy the "it's viral, no antibiotics" because I used to buy that nonsense.  Lots of sleep, water and good nutrition.  I'm not sure what stressor causes a relapse but, so far, even after a long winter, she is doing well. 

While I don't expect to cure this, I hope that we are minimizing it until it someday tapers off (which does happen).  I think you said that you live in Georgia so get your gorgeous boy some sun and try to ignore the "dumb dots" (my daughter calls them). 

I go on another chat site and it does seem that the first outbreak is the worst for everyone.  So know that it should only get better.  Believe me, this outbreak is a piece of cake!! 

Lots of good wishes to everyone.

Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Friday March 28, 2008, 12:02:00 AM
galpal,

Thanks for the feedback. And, thanks for saying my boy is gorgeous - he so is!!

I have also heard that the first is the worst outbreak. Then, it waxes and wanes but is usually never as bad as the first. So far, that has been the case for Dylan. As the others are clearing, he will get a few new ones here and there but not so widespread as initially.

Yes, I too would LOVE to know what triggers the outbreak. All I can remember with Dylan is that he had a runny nose for about one month. Then, most of the family came down with strep. I had him tested; but, his results came back negative. So, we were all on antibiotics except Dylan, and he comes down with PLEVA. So, who knows about the strep. He very well could have contracted it after we had him tested and then never got treated for it.

I agree with the good nutrition. I also think food can play a part. I have started keeping a diary of what Dylan eats and how the spots looks from day to day. Yesterday when he looked very red, he had cow's milk for dinner. I had been keeping him off that for a few weeks just to see what happened, and the spots were fading. So, I am going to keep him off of it again and see if that helps. I have been reading a lot of sites about the negative effects of cow's milk on children and adults. So, I will let you know if it helps. I have also sworn off fast food like McDonalds, Wendy's, etc. I try to cook for dinner every night now and always have lunch here or pack it for him myself.

Also, what cream did you say you used on the lesions? Muci-something. I have never heard of that. I have only heard of cortisone creams for the itch. I have been using "prax" for the itch and California Baby for the dryness. And, yes, we will be in the sun as much as possible now.

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: LIGA girl on Friday March 28, 2008, 12:14:01 AM
Hi Shauna

I have been following your story of Dylan, I am taking Erythromycin too and have been for over a year now with no ill effects. (I am also taking other drugs however which have been damaging). The Erythro finally worked to control my skin disease when the dosage was increased about 14 months ago. My derm told me it was a very safe drug.

I know I have a different disease from Dylan but I see some similarities to mine in what you are saying about his skin. Mine gets redder and itchier when I am tired or stressed. I have tried diet and it did not make any difference but I have improved my diet and rarely eat junk foods or dairy food now, it is better for overall health and to counteract the side effects of my drugs. I also had bad doses of flus for the 3 winters before getting my skin disease, I believe that may be a connection with my skin, too.

I hope Dylan gets better soon, he is a gorgeous boy and it sounds very hopeful for him.
LG
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Friday March 28, 2008, 12:23:37 AM
LG,

Thanks for your reply. It is so interesting to find so many following Dylan's story of PLEVA/PLC. You have the same condition as Bunnie, right? I am not sure I quite understand that condition, but I suppose all skin conditions have some similarities. How long have you had yours? And, will it eventually burn itself out like PLEVA is supposed to do?

You are right about Dylan's flaring up in response to different triggers. While I am not certain of the triggers yet, I am trying to pay close attention to what he does and eats and see how the spots react. Like I mentioned in an earlier post, he had a bit of a flare up yesterday after having cow's milk. He had not had it in a couple of weeks. So, I am assuming that is not good for him right now. From what I have read on-line, dairy is really not so good for anyone - especially cow's milk. And yes, good nutrition cannot hurt at all.

Good to hear you have not had any negative effects from erythro. Does sun help you? I remember Bunnie writing that sun is not so good for her.

Anyway, thanks for following Dylan's story. I will keep you posted.

Shauna


Title: Re: Pityriasis Lichenoides Chronica
Post by: LIGA girl on Friday March 28, 2008, 12:44:43 AM
Hi Shauna

Yes I do have a very similar thing to Bunnie hers is slightly different though, having an EBA component. Ours is supposed to burn itself out too, in our case, IgA antibodies attack our skin. Either time or drugs can help it burn out I have been told, probably the same as Dylan's. I've had mine for two years now and it is improving but I have taken so many drugs you wouldn't want to know about them all! My docs say I have been an unusual case though so dont get disheartened by mine.

Sun is bad for ours or at least it is indifferent, which is a pity as I live in a very sunny climate in Australia and love the sun! When the sun shines on new blisters they sting but for older ones it does not seem to matter.

I noticed that when I stopped eating dairy a long term sinus infection cleared up but it didnt seem to help my skin, so it has been worth it to change my diet.

All the best
LG
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Friday March 28, 2008, 10:45:51 AM
Hi Shauna, My disease mimics Liga in every way, it is no different in its manifestation or anything else. The reason being it is the iga antibody involved and not the usual IgG antibody which is usual in EBA. The only difference is that it targets the v11 collagen protein in the layer below the base membrane zone, of the epidermis, whereas liga is in the base membrane zone itself. Because mine is Iga mediated the resulting disease is liga, if that makes sense? In my own situation it also attacks the same protein in the BMZ,as in Lg's, but later a new test discovered it in the collagen area too. We do not know if it was always attacking that v11 protein or whether it migrated over time. The thing is these two proteins are right next to each other at that point. Some literature says it is a phenotype of EBA and others of Liga. It doesn't matter really whatever it is called the result is exactly the same.
Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Friday March 28, 2008, 02:54:32 PM
Hi all,

After reading the success story of Deidre, who posts under the name MJC, I decided to ask my pedi-derm about the light therapy. I just got off the phone with his nurse. Long story short - they have never treated this condition with light therapy before, and I am the first person to have ever asked about it!! So, they referred me to a group of derms who use light therapy mostly for patients with psoriasis and acne. I got the run-around when I called that office as well. I must have been transferred 5 different time and ended up leaving a message for one of the PA's. I am a little frustrated now as I was told that the pedi-derm we are with now has seen and treated this disease before. But, I find it hard to believe nobody else has ever asked about the light therapy and that he has never treated with it before.

Any suggestions would be appreciated. I live near Atlanta, GA. So, if anyone knows of a derm practice they recommend for light therapy, I would love to hear about it.

Thanks,

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Monday March 31, 2008, 03:33:32 PM
Hi again,

I am writing for advice from anyone here. In my previous post, I explained about asking about light therapy for Dylan and getting referred to another office. I spoke with a nurse from this other office and they set me up with an appointment for tomorrow morning with a PA and a doctor. (I don't know why I have to still see the PA). Anyway, they have seen a case of PLEVA only once. They said they did treat with antibiotics and light therapy. I don't know what the outcome was.

My question: Do you think I should stick with them or try Emory - the teaching hospital and university in Atlanta? They may have seen more cases of PLEVA than simply one.

Thanks,

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: galpal on Monday March 31, 2008, 09:28:07 PM
Hi Shauna,

I think you should seek the professionals who have the most experience with children.  If this local practice has lots of experience with children (even if not PLEVA) then it would be helpful.  After seeing my local derm, it was a great relief to find a doc at Boston Children's who had seen many cases.  His confidence that it would clear was very comforting.  Light therapy is a very accepted treatment for this condition.  The execution of light therapy is very important since it can burn the skin (go into back discussions of children being burned-I'm thinking it was summer 2007 post).  If you go that route, it is very important to find a top notch place.  Get specific instructions from the Doctor and don't let some flunkee make changes.   My daughter's Doc has talked with me about it but we would only use it if she had another severe outbreak.  Instead he recommended 20 minutes of unprotected sun exposure (not during peak hours) and then sunscreen her up.  She was clear within weeks except under her bikini and we went back to full sunscreen.  She is very fair so I'm careful about exposure.
I would do the light if she were hit hard and there was no available sun so you might at least explore it.  It doesn't mean you have to go forward with it.


Good luck.  Do you see any improvement?  I brought my daughter out on the deck last week for winter sunbathing and that one exposure helped.  We had a 60 degree day. 

Chris
 
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Tuesday April 01, 2008, 12:26:31 AM
Hi Chris,

Thanks for the advice. I actually feel comfortable with the pediatric derm we are with now. I was just extremely disappointed when he said he had never used light therapy on a case of PLEVA nor had anyone ever asked about it. He does not actually use light therapy in his office at all but frequently refers patients to a clinic that does - just never for PLEVA. He said he has seen many cases of PLEVA in children; and, all those cases cleared - some took longer than others but all eventually burned out.

I decided to check around just to get another opinion on what to do about Dylan. Plus, I was very encouraged by Deidre's story of her son Dakota. His PLEVA cleared in only 3 months. I did see some posts about children being burned though. That was scary to me, so I will make sure and talk with the doc's about that before starting anything with Dylan. They may simply suggest losts of outside play.

How is your daughter doing? Are her spots pretty much clear now? Dylan is still on erythro. I am so scared that when he gets off of that, he will have another outbreak.

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: galpal on Wednesday April 02, 2008, 01:46:43 PM
Hi Shauna,

I like the idea of lots of outdoor play.  I took my daughter off the Erythro after a couple of months.  It may have helped but it didn't knock it out.  A week in the sun did that.  The Erthro acts as an anti inflammatory and doesn't prevent the outbreaks so when he is done, don't worry that stopping will cause an outbreak.  Check with your doc about sun exposure with the erythro-I can't remember if it is advised.

My daughter is doing well.  She went June-March without anything significant.  This current crop is nothing compared to last year.  They are already looking better and I only see a few new ones and they don't seem to be developing into the big sores/scabs.

Keep your spirits up because this will improve.  The timeline is different for everybody.

Chris
Title: Re: Pityriasis Lichenoides Chronica
Post by: bhmars on Wednesday April 30, 2008, 01:50:43 AM
Hi , I am new to this forum but, I am not new to PLC.  I have had PLC for almost 2 years now.  I got it about 1 month after I had my second child and I have had it ever since.  I have had 4 biopsies that confirm it is PLC.  Mine never completely goes away.  It is worse at times but never am I clear of all spots.  I was wondering if anyone else that has PLC when their spots start to go away, do the spots ever become like a patch of dry skin?  Several of mine are rough when I run my hands over it and appear like a dry patch.  I go to see my derm. every 6 months just to have him check and he is never concerned but I am always worried.  I am so scared that it will turn in to cancer.  If I have been diagnosed w/ a biopsy that it is PLC then, does that mean I shouldn't worry about cancer? 
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Wednesday April 30, 2008, 11:33:49 AM
Hi bhmars,
Quote
If I have been diagnosed w/ a biopsy that it is PLC then, does that mean I shouldn't worry about cancer? 
No you really shouldn't bhmars.  I don't have your disease, but the genetic cause of these diseases are the same. Please do not worry that you will get cancer from having this condition. Cancer cells, are simply that, you either have them or you don't.  Many of these diseases proliferate in the same way as cancer cells, but the cells themselves are not cancerous. Cancer is not infectious. I know our skins often look dreadful with sores and plaques, but that doesn't mean it is or will ever develop into cancer. Cancer is a totally different thing. None of us know if we will develop cancer somewhere in our bodies throughout life, but there is a tendency for it to run in families. Please do try not worry unecessarily bhmars.
regards Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: bhmars on Wednesday April 30, 2008, 01:59:11 PM
Thanks Bunny,
I guess I worry because I read an article that said that 10% of people with PLC will develop a form of Non Hodgkin's Lymphoma.  10% seems like a lot!  If I had a 10% chance of winning the lottery, I would play every week :) My doctor doesn't seem worried but then again, sometimes I wonder if Doctors feel your energy and if they know you are having a lot of anxiety about something then they stay really calm and try to make it seem ok. 
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Wednesday April 30, 2008, 02:40:34 PM
Dear Bhmars,

When I was first diagnosed with PLC/Pleva, my doctor said that it USED to be thought that those with PLC/Pleva may develop a form of Non-Hodgikin's Lymphoma. She assured me that is no longer the case. I have been battling this mess for more than 5 years now and have had many biopsies and blood tests with no such diagnosis even though the disorder has changed many times over the years.

My doctor is Julia Nunley, a Dermatologist with VA Commonwealth University and was voted #1 doctor in Richmond 3 years in a row, this year slipped to #2. I trust her implicitly and would not worry about contracting that disease unless your doctor is. They also believed that only children developed this disorder and would outgrow it at puberty. I was 49  when I did and am still awaiting puberty! I guess my grandmother was right when she said you're only as old as you feel!

Regards,
Eseaeff
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Wednesday April 30, 2008, 03:07:26 PM
Hi again bhmars if you read my posts on here, it tells you why you have this condition and concerning the Lymphoma. read posts 286 and 289
http://www.skincell.org/community/index.php/topic,11344.280.html
Let me explain about the lymphoma from the quote I left in 286.
Lymphomatoid Papulosis is cutaneous lymphoma. Lymphoma is cancer of the white blood cells.
PLC is thought to be a Lymphoproliferative disorder. A Lymphoproliferative disorder is not necessarily cancerous, unless of course the cells themselves are cancerous. That is the likeness between these types of autoimmune conditions and cancer. Not because it is cancer but that the cells (lymphocytes) proliferate  (to increase in number or to grow by rapid production of new parts)like cancer cells do.
Lymphoproliferative: Referring to the proliferation of the bone marrow cells that give rise to lymphoid cells (such as lymphocytes and plasma cells) and reticuloendothelial cells (such as macrophages,  which engulf foreign particles).
These macrophages are antigen-presenting cells, called Dendritic cells. They engulf antigens and present particles of them onto their surface, because this is the only way a Tcell can recognise them in order to destroy them.
The term lymphoproliferative is in contrast to myeloproliferative which refers to proliferation of bone marrow elements from which come red cells, granulocytes, and platelets.
Both terms -- lymphoproliferative and myeloproliferative -- can apply to conditions that are entirely benign, premalignant, or frankly malignant. Although very rare, people who are possibly predisposed to having cancer, may get cutaneous lymphoma.
I understand that plc and pleva very rarely result in cutaneous lymphoma or Lymphomatoid Papulosis.
Please note that which is in italics
Quote
Lymphoproliferative disorders are conditions in which there excessive numbers of lymphocytes (T-and B-cells), including lymphoma (a malignant growth of lymphocytes).
The idea that pityriasis lichenoides may be a lymphoproliferative disorder arises because lesions of patients with pityriasis lichenoides showed the presence of immune T-cells with specific CD30+ markers or antigens in PLEVA,and loss of CD7 antigens on T-cells in PLC.
These characteristics of T cells are indicators of lymphoproliferative disorders.
The third theory behind the cause of pityriasis lichenoides is the detection of circulating immune complexes, aggregations ( A massing together or clustering of independent but similar units ) of antigens and antibodies deposited in the skin in some patients with the condition(As occurs with my own condition.)
Immune complexes occur when an antibody joins with an antigen. As there is a proliferation of these joined antigens and antibodies, they form a veil-like structure which circulates. When it stops it deposits itself in different areas of the skin and it can be seen in biopsy. It creates a reaction in the skin of course.
Quote
The above quote, taken from this link below, proves most of my explanation and why you had an increase of T-cell count stillitchy, but maybe your doc was not anxious because the count was within the guide lines of this condition?
http://dermnetnz.org/scaly/pityriasis-lichenoides.html
Hope this clarifies things a bit and hopefully assures you concerning cancer etc.
regards bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: bhmars on Thursday May 01, 2008, 08:22:34 PM
Thanks so much Bunnie and Else  I guess it makes me feel better.  I have 2 young children and worry about not being here for them!  Really I shouldn't complain, after reading a lot of the post, my PLC seems rather minor.  I have spots all over my body but it is the worst on parts that are hidden by clothes.  I do occasionally get a tiny spot under my eye and I use to have one on my eyelid.  I got that to go away by using a steroid cream and so far,....knock on wood....it has not come back. Does anyone else seem to think that their spots are really noticeable after getting out of the shower?  or if their PLC ever looks like a dry patch?  It isn't angry looking or anything, just a circular dry patch.  Some of mine turn like this after an outbreak and some turn flat and brown.  I really like my derm but was wondering if anyone knew of any Doctors that are well educated on PLC/Pleva in the Baltimore area?  I figure since I am near Johns Hopkins, maybe someone knew of a really great doc. that might know a great deal about this condition.  Thanks
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Friday May 02, 2008, 08:12:20 PM
bhmars,

Hi. My son Dylan has PLEVA. He has had it since December. He looks much better than when he had his first outbreak. The poor boy was covered from the neck down with what looked like big red polka dots. He even had a few that broke out along his jaw line and one on his eyelid. We started him on erythromycin in late January. That helps with inflammation. The spots started fading then. Our derm just keeps telling me to get him outside in the sunshine as much as possible. That is what is supposed to really help this condition. He assures me that the condition will eventually burn itself out. So, that is what I am waiting for.

As Dylan's spots progress and fade, they leave a white dry Mark on his skin. A lot of spots have left behind a dry patch like you referred to in one of your previous posts. Some of them even seemed to spread and grow together leaving larger patches. It is such a weird condition. His spots seem to always follow the same pattern. They start out as brownish little dots which turn to red. Then they get a little bigger, form a crusty center like a scab. The scab falls off and leaves a little pink mark which fades to white. I am hoping the white marks fade eventually too.

Anyway, I hope your condition improves. I am sure it will. It seems to me that this disease always begins with its worst outbreak and slowly fades over time. It waxes and wanes with several outbreaks after that always less and less than the one before.

Good luck.

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Friday May 02, 2008, 08:17:38 PM
bhmars,

I also wanted to add that my son's derm immediately squashed my fears about the link to cancer. He actually told me to stop reading so much on the internet because you really never know who is writing what and if they are truly knowledgeable. So, I did. I just read posts here and a few articles on the derm websites. I also have a friend who is a dermatologist who told me that the percentage of people getting cancer with this condition is so low that they really don't know if there is a link between PLEVA and cancer or that the people would have gotten cancer regardless of whether they had PLEVA or not.

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: bhmars on Saturday May 03, 2008, 07:23:39 PM
Hi Shauna and Elseaeff,
Elseaeff:  I could not figure out how to send you a private message but thanks so much for your kindness!  I would love if you would ask your Dr. about a JH Dr.  I'm in no rush so next time you go to the Dr. is fine...no need to make a special call or anything.  I really do appreciate it.  It is so kind of you.  I figure since I live so close to one of the best hospitals in the world, I might as well take advantage of it since some of the greatest Dr.s also come from JH! 
Shauna:  Thanks so much for your encouragement.  I know... every doctor I have been to says to stay off the internet!  I am so glad your son is doing better!  I hope it clears up totally soon.  It sound like his is getting better.  Mine however, does not seem to get better.  In fact, it was at its worst this winter.  I remember in August I was at a hotel and went swimming w/ my kids for a few hours.  After I got out of the pool and went back to my hotel, I was changing out of my suit and I looked in the mirror!  I was shocked!! I had spots all over my body except my face!  They did fade after a few hours but that is the moment I realized how many spots I had.  I guess the H2O must make it worse.  I always thought hot water did but apparently it's any water.  I had already been diagnosed w/ PLC in May of 2006 but this is when I realized how bad it was!  I have had many outbreaks all winter long!  I have decided that the last 2 weeks it is getting better...the sun is finally strong enough to help I guess! 
Take Care   
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Tuesday May 06, 2008, 04:38:04 PM
Dear bhmars,

I know exactly what you mean about showers, etc.. and making PLC look more red and inflammed.  After my daughter has a shower, or even jumps into the pool,  it "brings out" the PLC alot more, and makes everything look alot more red/spotty.  You can even see spots that you didn't think were there.  She even gets a smattering around her chin area, although they tend to be more discreet.  She is nearly 10 and has had this for nearly 8 years.  :(

I am awaiting puberty....I am so tired of it and do worry.  You are in a way "lucky" that you have it and not your daughter.  I wish I were the one with PLC and I wish my daughter didn't have it. 

I noticed the increased redness/spottiness from the water tends to take a few hours to fade, but it always does.  If she showers at night (which is typical), it is always faded again.  But she is never free from spots.  The worse areas are around trunk area, upper legs, and upper arms.  She has spots else where but they are not as pronounced.  It is pretty extensive though.  But summer is here, and it does start to improve with a little sun. 

What about you? Did doc give you any info on duration?  Everyone seems so different. 

Sincerely,

J
Title: Re: Pityriasis Lichenoides Chronica
Post by: galpal on Wednesday May 07, 2008, 03:07:30 AM
Hi Bhmars,

Sorry you have been tolerating this condition for so long.  My daughter has it and her spots come to life after being in the water, too.  She's better now (better means not too many) after a tough March.  The sun does help her spots but not underneath her bathing suit.  Those never go away. 

I hope puberty does knock this thing out.  I am going to ask at my next derm visit about the puberty connection.  I read that the Thymus Gland produces t-cells and that this gland shrinks at puberty and is in slow decline thereafter.  I wonder if this is connected to the burn out at puberty.  Of course, that does not explain the adult Pleva/plc.  Maybe your thymus isn't in slow decline!

The other weird thing is that her spots are somewhat symmetrical.  They almost match on both sides of her body.  If I see one on her right leg then I know one is likely to appear on the opposite leg. 

Trying to stay positive.........

Chris






Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Wednesday May 07, 2008, 12:26:30 PM
Hi everyone, If you are interested, (I certainly don't wish to intrude or offer information if it is not welcome) but I think I might be able to explain the following....Although my explanation may not be perfect, (so please don't be too critical) It's complicated, still under research, and I don't think a specialist would have the time to explain it, although there are some who are willing, especially if their patient really wants to understand.
 
Quote
I wonder if this is connected to the burn out at puberty.  Of course, that does not explain the adult Pleva/plc.
First it is essential to understand that not every case remits at puberty, a very small percentage do carry on into adulthood. To understand the function of Tcells scroll down on this link to lymphocytes, and I describe what happens in the Thymus. Basically these lymphocytes, shortly after birth, migrate from the bone marrow to the Thymus, an organ in the top of the chest, where they mature to become T cells. Here they undergo a process of positive and negative selection , whereby they learn to distinguish self from non-self. Those that survive these processes become Tcells.
http://wassail-allthatilove.blogspot.com/
To explain
Quote
I wonder if this is connected to the burn out at puberty
Quote
The thymus gland, is a primary organ of the immune system.  It activates T cells and produces hormones key to the immune system.  At puberty, our immune system is at its zenith, and the thymus gland is at its largest.
It is known at this time to "Involute" , (which means to return to a normal or former condition.) I am not 100% sure, if this is the reason, (maybe 99%!!)  but cells which secrete the human growth hormone (HGH) improve immune activities, for e.g
Manufacture of new antibodies
Increased production of T cells and interleukin-2
Greater proliferation and activity of disease-fighting white blood cells
Greater activity of anticancer natural killer cells
Stimulation of bacteria-fighting macrophages
Increased maturation of neutrophils
Increased production of new red blood cells
This then (in italics) could account for these hormone changes altering the genetic predisposition.
To explain
Quote
Of course, that does not explain the adult Pleva/plc
The majority of autoimmune conditions appear for the first time after the age of 40, with an average age of onset, around 50-60yrs.  Almost immediately after puberty the thymus begins to shrink until it is a shriveled shadow of its former self by age 40.  By age 70, more than 95% of it has turned to fat or fibrous tissue.  The shrinking thymus correlates with a rise in the diseases associated with aging, including cancer, heart disease, Alzheimer’s, autoimmune diseases, and infectious diseases.  There is also a decline in T cells and immune factors, such as interleukin-2.  As such, scientists believe that restoring the thymus gland to function can rejuvenate the immune system. Immunologists have shown that injections of cells that secrete human growth hormone (HGH) could regrow the shriveled thymus gland.

If then at puberty, there is a proliferation of the human growth hormone, and this (having the affects that it does,by improving immune activity, as listed above)  causes, (because of the increase of production of these cells,)  an alteration of the genetic predisposition,  then equally, if, as is known, at around middle age, there is a reduced or almost total depletion of the immune factors in that list above, then that accounts for the majority of autoimmune cases rearing their ugly head at this time of life.
I also found this very interesting , although it is only postulated ....
http://iji.sums.ac.ir/winter2005/letter.pdf
regards Bunnie

Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Wednesday May 07, 2008, 03:45:26 PM
Galpal,

You may be interested to know that my daughter has symmetry to her spots as well.  Were you the one in the Boston area who saw Gellis' colleague?  Can't remember.  Does your daughter have chronic PLC or the more acute PLEVA?  Mine has PLC (chronic). 

Sincerely,

J
Title: Re: Pityriasis Lichenoides Chronica
Post by: Needs a Hug on Thursday May 08, 2008, 07:30:38 PM
Hey guys! Hope you don't mind me joining with a few questions...

So my derm didn't exactly explain the big difference between pleva and PLC but he told me it was 'more than likely' pleva and that I should get over it and it will hopefully never come back. Can someone please explain the difference in diagnosis/prognosis?

Also, I've been reading a lot also saying that it's an autoimmune thingy... is that to say that the medication I was on right before I got it had nothing to do with the spots? My mother believes the medicine caused the pleva as does my boyfriend... and so did I until I read this. Now I'm think my genes are just basically messed up... is that correct? Or was it like...  a condition brought out because my body had an adverse reaction to the medication (which is what I thought happened)?

Though it may be something unrealistic right now is this something that could be helped with gene therapy if it is just messed up genes? I'm not a science-y person so maybe it's not even plausible, but I figured I might ask anyway.

Another thing I am confused about is that my spots don't turn into sores or anything, they just get dry and flake over and then they leave purpura... is that normal for this condition?

Thanks everyone.
:hugs:

Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Friday May 09, 2008, 12:20:03 AM
Hi You got here Needs a hug. to answer this for you...
Quote
Also, I've been reading a lot also saying that it's an autoimmune thingy... is that to say that the medication I was on right before I got it had nothing to do with the spots? My mother believes the medicine caused the pleva as does my boyfriend... and so did I until I read this. Now I'm think my genes are just basically messed up... is that correct? Or was it like...  a condition brought out because my body had an adverse reaction to the medication (which is what I thought happened)?
All autoimmune diseases stem from mutated genes, predisposing the person to having an abnormal immune response. Normally an immune response attacks invaders of the body, but an autoimmune response attacks "self tissues", as the abnormal immune response is misdirected to self. This response can be stimulated by either internal factors , for eg. hormones , insulin,  or out of the body factors like viruses, bacteria, drugs etc. or yet again a mixture of both. The disease which manifests (there are over 80 different ones) is simply the pathogenic result of these malfunctioning immune cells. If these mutated genes are stimulated by an infection, let us say as is usual in pleva, by the staphloccus virus, then as the information in the DNA of the gene is transcribed, and made into proteins, if the gene is faulty then all the cells produced within that immune response will be faulty.
In a normal immune response to viruses etc. the Bcells produce antibodies to fight the invader. In an abnormal, autoimmune response the antibodies produced in this response, attack self tissues, and the production of them is in excess, because certain Tcells which regulate the immune response and the production of antibodies, are unable (because they are malfunctioning too) to switch the production off.
That is why some of us take immunosuppressants. Immunosuppressants do just that, they suppress the production of the abnormal antibody, but it also suppresses the rest of the immune system cells too, as these drugs are indiscriminate.
Certainly the medicine you took could have triggered this off in you, or if you were taking the medicine for a certain virus, it could have been the virus itself and not the medicine.   The medicine could have caused a  normal body substance to  alter. For example, viruses, drugs, sunlight, or radiation may change a protein's structure in a way that makes it seem foreign.
The immune system responds to a foreign substance that is similar in appearance to a natural body substance and inadvertently targets the body substance as well as the foreign substance. The majority of autoimmune diseases occur idiopathically, which means having no specific cause, spontaneous and to self. Usually if the disease was triggered by drugs or something not of the body, then it usually burns out within a much shorter time, however even this can last years in some cases.
Please see my blog for further info. on this subject if interested. There is a lot more to it.
http://wassail-allthatilove.blogspot.com/2008/03/disorders-of-immune-system-immune.html
Sorry it's long winded, but one can't possibly explain these processes briefly.
Kind regards Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Friday May 09, 2008, 07:20:26 PM
Hi Everyone,

It is so comforting to read through everyone's posts and see the similarities in people with this disease. It is also comforting in knowing that my son is not the only one with this crazy condition.

Dylan's spots also seem a bit symmetrical. He just got 2 new spots on his left hand a few days ago; now, there are 2 new ones on his right hand. The same things seems to happen on his arms, legs, torso and back.

I wish I could just let him run around naked outside all day long. His lower arms, legs, face, and neck are free...for the most part of spots. But, his little bum, and upper legs and arms are still pretty spotty. The sun has really done wonders for the exposed skin areas. I am taking him to a new dermatologist next week. She works at Emory - a teaching university hospital in downtown Atlanta. The fact that the receptionist knew what PLEVA was when I called to make the app't was very encouraging. They see many cases of PLEVA in their office. I am hoping she will get him into some light therapy. Our current derm does not recommend it. I did take him to an office that offers the light box treatment; insurance approved. But, the woman in charge of light therapy was uncomfortable doing it on a 3 year old. So, maybe the dr. at Emory will be comfortable with it if they use that kind of therapy. I am just hopeful the light therapy will burn out the PLEVA.

Ok. I do have a question in all of this - not just babble. Dylan's spots in the beginning were very large, "angry looking," and very red. Then they sort of crusted over and were dry and flaky. Most of those faded leaving a white mark behind. These new spots he is getting are tiny and fade within days. Is this condition turning from PLEVA into PLC? Just wondering if anyone has insight on this - perhaps J, since your daughter has had her condition for so long.

And, Bunnie, how are you doing? Things have been so busy here I have not posted for a while.

Thanks,

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Friday May 09, 2008, 09:10:33 PM
Hello ShaunaHow very kind of you to ask. I'm fine thank you. The heat is killing me though! Ugh! Itch! I haven't slept all week and waking up tired. Isn't it strange how the sun helps some conditions and others not? Certainly bad for mine. I have had 2 scares with basal cell carcinomas, and both in places constantly covered, and of course I never ever go out in the sun. It's probably due to the long term immunosuppressants, all the treatments I've had have certainly taken their toll.
I can imagine how thrilled you were for the receptionist to know about pleva! I have spent all these years explaining my condition not only to GP's but some specialists too! The majority are keen to know, and now I must explain the OOKP!
I'm delighted that Dylan seems to be improving, and I hope too this new Derm will be even more promising.
I look forward to learning all that this derm has to say, it is so encouraging that she? has treat a few patients with it. Big hug for Dylan too!
regards Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: galpal on Friday May 09, 2008, 09:42:45 PM
Hi Everyone and Many Thanks to Bunnie for the interesting info.  I will definitely click on Bunnie's research to learn more about the puberty/hgh  connection. 

I'm amazed that Shauna and J both report the symmetry with the spots.   I want to understand why, though.  I'm not sure if my daughter is still PLEVA or evolved into PLC.  She has had the condition for 18 months.  Most of her spots are like Shauna's recent description.  Small and go away fast.  She has had a few angry, deep sores (maybe 10) in the past 6 months.  The rest are more like PLC.  Her doctor is at Boston Children's and there is a grey area between the two conditions. 

I know summer is almost here so my girl is not feeling bad about it.  Also, her doc agrees that the sun exposure has a lingering effect.  We had a good 3-4 months after summer's end with no real activity.  So I'm hoping after this summer that they are burned out before winter hits.  If not, then maybe the next year. 

Fondly,

Chris

Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Saturday May 10, 2008, 02:42:20 PM
Hi Needs a hug,
Quote
Can someone please explain the difference in diagnosis/prognosis?
Well I can try with the diagnosis bit, but you may be bored to death! I find it a fascinating subject however. If you look on Youtube you can see animated Normal immmune responses. Very interesting! Heres the link, if not allowed please remove it.
http://uk.youtube.com/watch?v=1tBOmG0QMbA
To TRYand explain. If I may make bold the important bits, simply for noting.
Previous studies evaluating the DNA of biopsy specimens from patients with PLEVA and PLC revealed
clonal T-cell receptor β gene rearrangements.

This symbol β stands for an alpha/beta gene.
T cells are distinguished from other lymphocyte types, such as B cells and Natural killer cells (NKC's ) by the presence of a special receptor on their cell surface called the T cell receptor (TCR).
These receptors develop in the thymus through the Pos/neg selection process.
Tcell receptors
The surface of each T cell displays thousands of identical receptors (TCRs) that bind to antigen fragments nestled in MHC/HLA molecules. (Antigens from invading cells, viruses etc, can only be recognised by Tcells if they are presented by antigen presenting cells, on their MHC molecules. These MHC sometimes called HLA's -Same thing,  are self (of the host)antigens, which are on ALL cells) .
The Tcells either develop a CD4+ receptor, or a CD8+receptor  through the selection process in the thymus.  Some of them (CD4+) secrete lymphokines which act on other cells involved in the immune response. Others (CD8+, cytotoxic) are able to cause lysis (the death) of infected cells. These are Killer Tcells.
As it says in the quote above "patients with PLEVA and PLC revealed clonal T-cell receptor β gene rearrangements; this then, (as far as I understand it ) refers to the Tcells with the cytotoxic CD8+ receptor.
The alpha/beta gene is the HLA /Mhc self antigen class11, specific to the CD8+ receptor. (I think)
These "rearrangements" are called Somatic Hypermutations, and they occur naturally as the gene arrangement is altered, as the immune system aquires and adapts to each new invader it encounters throughout life. Disturbances such as somatic (relating to the body) mutations in cells of the lymphoid system could in principle give rise to forbidden clones of cells that fail to recocognise self and instead react immunmocologically with normal tissues.
Central tolerance is not always complete. It is estimated that as many as 25–40% of T cells reactive to a self-peptide escape clonal deletion in the thymus. These T cells include low-affinity, autoreactive T cells, and T cells specific for self-antigens not presented in the thymus. T cells must remain tolerant (to ignore) to harmless environmental antigens found in the respiratory tract or intestines.
The existence of autoreactive T cells into the periphery (around the body) necessitates the role for DCs (Dendritic Cells) in peripheral tolerance to prevent autoimmunity.
Killer Tcells CD8+ require a signal from a Helper tcell to activate it.  Autoreactive tcells  that have escaped the selection process in the thymus, are characterized by the expression of CD40.  CD40 is a marker associated with antigen-presenting cells, but is also expressed on this subset of T helper cells. Th40 cells are found in all individuals but occur at drastically expanded percentages in autoimmune subjects. This is true of autoimmune humans and mice. T cells are the cells, which modulate pathogenic immune responses, therefore if this killer tcell is stimulated into action by a helper autoreactive tcell , (instead of a normal helper tcell) an abnormal response will occur.  If you read in my link below, it explains the process. Read from Helper Tcells down to and including autoaggressive tcells, especially the last paragraph concerning CD40 markers on tcells. Scroll a bit and just below read also what CD markers are, and how the specific number is the marker for certain gene molecules.
http://wassail-allthatilove.blogspot.com/
Quote
Conclusions: Our results demonstrate the polyclonal nature of the lymphocytic infiltrate found in almost all of the PLC specimens, which contrasts with the monoclonal nature found in most of the PLEVA specimens.
These differences may represent different stages of the clinical evolution  of a single entity that results from varying host immune responses to pathogenic factors. Specifically, we propose that PLEVA is a benign clonal Tcell disorder in which the clone arises from a subset of T cells in lesions of PLC. The host immune response to this clone determines the clinical and histologic findings in PLEVA.
Polyclonal:Polyclonal antibodies. A mixture of immunoglobulin molecules secreted against a specific antigen, each recognizing a different epitope
Polygenic. Controlled by or associated with more than one gene.
Monoclonal: All the same, as when gamma globulin cells (antibodies) made by plasma cells have proliferated from a single cell. Such a population of identical cells is called a "clone," and "monoclonal" means a single clone.
Monogenic -modifications in a single gene .

I am not sure but I think the actual difference could be that the polyclonal nature of the lymphocytic infiltrate in plc  may arise from infection stimulating the faulty genes, and the pleva may arise as a phenotype or a sub-class of plc, due to the Somatic hypermutation, gene rearrangement; (this gene rearrangement does produce a phenotype of a disease, as ppp is of psoriasis for eg.) the infection having stimulated an autoreactive helper tcell with a CD40 marker, resulting in this gene rearrangement!

I know its complicated, that is why I am always advocating learning about the structure and function of the immune system first, before attempting to understand malfunctions of the immune system.
Sorry! as usual I didn't realise it was so long!
Regards Bunnie

Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Monday May 12, 2008, 03:15:55 AM
Hello PLEVA and PLC'ers

I added some pic's of Dylan to the gallery. I took some of them at the worst stage of his PLEVA so far and some as the spots have started fading. It would be interesting to see and compare others with PLEVA. Let me know if any of you add photos of you or your children.

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Monday May 12, 2008, 05:21:23 PM
Hi Shauna,

My daughter never had PLEVA lesions; just PLC.  The PLC lesions do not have necrosis/pussiness.  Based on my understanding of PLC vs. PLEVA, they are the same disease, just opposing spectrums.  It is apparently common for people to have both PLEVA (more acute lesions) and PLC (milder, more "chronic").  Generally, if you solely develop PLC, it doesn't turn into PLEVA; however, I have heard of PLEVA people changing into more PLC.  PLC lesions, milder, smaller, no bleeding/pussing sores.  Just a dry, spotty patch that looks reddish/pinkish.  Spots are pretty extensive, similar to your son.  Alot of times, with PLC, you can have a dry "scale" of skin that peels off the spot, making it look more "shiny", but still reddish-pink. 

I am curious what they tell you about Emory.  My old doc (who I miss!) In Boston Children's was not a proponent of light therapy for kids.  Just ambient sunlight in summer.  We live in Florida now, and have a pool.  I still put sunblock on them; the UV is pretty intense here, even with sunblock, there is a noticeable improvement. 

Please keep me posted on what they say at Emory.  I am interested, to see if it differs from my knowledge.  Thanks,

J
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Monday May 12, 2008, 06:10:21 PM
Hi everyone, if I may just refer to the definition  and meaning of the medical terminology  acute and chronic. 
Both acute and chronic conditions can be either mild , severe or even fatal.

An Acute illness typically will "run its course" regardless of whether or not there is drug intervention. .

A Chronic illness is one that requires medical supervision and is often a disease that has formed over a long period of time.  Usually, medicines for chronic illnesses are regulated as Prescription Only.

Many individuals confuse the difference between an acute disease and a chronic disease. An acute disease lasts for just a short time, but can begin rapidly and have intense symptoms. In contrast, a chronic disease produces symptoms for quite some time, lasting for three months or more.

Often, people are confused as to what constitutes an acute disease. They believe an acute disease is always severe. In reality, an acute disease can be mild, severe, or even fatal. The term acute does not indicate the severity of the disease Instead, it indicates how long the disease lasts and how quickly it develops. Examples of acute diseases include colds, influenza, and strep throat.

A chronic disease is persistent. It lasts for a long period of time and may recur. Like an acute disease, a chronic disease can be mild, severe, or fatal. Examples of chronic diseases include kidney disease, cancer, and diabetes. Unlike an acute disease, a chronic disease is likely to develop over time instead of having a sudden onset.

Some acute diseases may resolve themselves, without requiring significant medical attention or treatment. For example, an individual may recover from influenza at home, without taking prescription medications or requiring the care of a physician. Pneumonia, on the other hand, is an acute disease that often requires medical care and prescription medication. Frequently, hospitalization is required as well.

Chronic diseases often require the care of a medical professional and the use of prescription medications. Sometimes, hospitalization is required as well. For an example, an individual with diabetes may need to see a doctor on a regular basis and take prescribed medications. An individual with kidney disease may require professional medical care, medication, and dialysis. Frequently, medical intervention may make an individual with a chronic disease more comfortable, but usually chronic diseases cannot be cured.
Regards Bunnie




Title: Re: Pityriasis Lichenoides Chronica
Post by: Samuel9817 on Tuesday May 13, 2008, 01:31:33 AM
Hi I'm still new here and learning about this disorder. Has anyone else been on tetracycline and did it help. It doesn't seem to do much for me but my Dermatologist thinks it will eventually. I've been on it since December of last year. I decided to try Palmer's Cocoa Butter for the spots, does anyone use that also ??
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Tuesday May 13, 2008, 09:18:41 AM
Hi I'm still new here and learning about this disorder. Has anyone else been on tetracycline and did it help. It doesn't seem to do much for me but my Dermatologist thinks it will eventually. I've been on it since December of last year. I decided to try Palmer's Cocoa Butter for the spots, does anyone use that also ??

Hey Samuel I also used Tetracycline and it seemed to help me. I would advise maybe increasing the dose. I was taking 2 - 2x daily.
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Tuesday May 13, 2008, 03:19:13 PM
Quote
Please keep me posted on what they say at Emory.  I am interested, to see if it differs from my knowledge.
J,

I will let you know what they say at Emory. I do not think light therapy is recommended for young children as they could be burned or hurt their eyes if they were to remove the goggles. I am just interested in this doc's treatment plan. She sees PLEVA a lot in her office - or so the receptionist tell me.

Also, I added pic's of Dylan on the gallery under general skin conditions. Is this what your daughters skin looks or looked like? Just curious.

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Tuesday May 13, 2008, 05:15:58 PM
Shauna,

I saw the pictures!  Your son is so adorable.  His milder lesions look very similar to my daughters'.  However, the tops of her arms are never as afflicted as the undersides, and, esp, on the upper/back of arms.  (Although, the lesions are extensive, just milder in certain areas).  She has never had the PLEVA version.  It is so good to talk with other PLEVA/PLC parents and share information/insight, esp. from one mother to another.  I look forward to hearing about how Emory goes. 

Sincerely,

Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Tuesday May 13, 2008, 06:13:07 PM
J,

Glad you viewed the pic's. And, yes, I think he is adorable too.. but I am biased.

So, he must have PLEVA lesions if your daughter was diagnosed with PLC and has milder lesions. Or, maybe he has both. I have heard of PLEVA develping into PLC. AH, how confusing. I will find out more tomorrow at Emory. I will let you know what I find out.

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Tuesday May 13, 2008, 10:07:37 PM
hi shauna, Dylan is so cute! I found this medical article interesting concerning the differences of the two, although pleva is a phenotype of plc, (and febrile ulceronecrotic Muchas-Habermann disease is a subtype of pleva) it says here that pleva has itchiness, painful lesions and irritabilty whereas plc does not. Don't know if that is typical or not?
Bunnie
http://dermnetnz.org/scaly/pityriasis-lichenoides.html
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Wednesday May 14, 2008, 02:18:13 AM
Hey Bunnie!!

Thanks for the article. I had read one similar to that before. Unfortunately, I never understand most of what I read in those things. It does seem to me that Dylan may have lesions consistent with both PLEVA and PLC. Some of his itch; some never bother him at all. Some are very small and fade in days; others get very large and develop that central scab that the article referenced.

Luckily, he is still doing really well with this. I really don't think he even notices his "bumps" at all. His exposed skin areas are fairly clear. A stranger looking at him really would not notice anything at all. The parts that are covered by clothing are still pretty spotty though. I just hope with summer and swimming -they will fade too. I just cannot help but worry about the chance it could develop into some sort of skin cancer. I try not to think about that, but it is hard.

Anyway, glad you liked the pic's. Oh, and sorry to hear about your itchiness. It must be hard having to stay out of the sun. Can you go out if you are completely covered - hat, long sleeves, long pants, etc.?

Talk to you soon,

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Wednesday May 14, 2008, 01:32:39 PM
Hi Shauna, The very very rare odd case Shauna has proven to develop a more serious aspect, but so rare as to be considered  irrelevent, from what i have read anyway. You see the individual must also have active cancer cells. The predisposition to cancer does tend to run in families, but even then , not all of those individuals will develop it ever, in any shape or form. Do try not to worry about that Shauna. You see this is why I try to encourage people to understand how the immune system works, because it answers the simple questions that we all have, and puts the situation into perspective.
Quote
Can you go out if you are completely covered - hat, long sleeves, long pants, etc.?
Oh I do! but its the heat Shauna!  Ugh!  I feel so lethargic, and a bit nauseus actually when I get too warm. I'm covered with blisters all around my neck , one or two on my chin, and under boobs etc. All the warm places!  My legs and feet are swollen, at the best of times, but now each toe is like a little sausage! My feet are so swollen they throb! Roll on September!!
Good wishes Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Thursday May 15, 2008, 02:52:49 PM
Quote
Please keep me posted on what they say at Emory.  I am interested, to see if it differs from my knowledge.  Thanks,

J

We had our visit at Emory yesterday afternoon. It went well; the doctor was very friendly and encouraging. But, she basically told me the same thing our current pedi derm has been saying - that this could last for a while, probably a few years and they do not recommend light therapy. She said with it being summer, he will most likely completely clear with a few lesions returing in the fall/winter. She said that Dylan should stay on the erythro for another 1 to 2 months until he is mostly clear and see how his skin does. The typical treatment is to go back on the erythro if there is another outbreak until it clears the skin and then go back off. So, on again off again is what they recommend and loads of sunlight. She recommended letting him out with no sunscreen except on the tops of his shoulers where most people get burned. She also said she believes PLEVA/PLC is caused by a virus or it is a virus. So, that makes me wonder if I should let him take something to boost his immune system to rid his body of this virus. Bunnie, you can proabably answer that for me. Please and thank you.

So, bottom line is that we are going to stick with our current pedi derm as he is only 15 minutes away; Emory is a good 45. The doc at Emory said this treatment plan Dylan is on is the exact same as she would prescribe. She apparently is friends with Dr. Caputo, the doc we have been seeing. They flip-flop patients a lot. That makes me feel good. They are both great at what they do and seem to be very knowledgeable. The doc did say this disease could linger on for quite a while but that he will not always have it. It will go away eventually. In one of her rare cases, she has a patient who has had it since she was 3 and is now 27. But, that is apparently RARE. But, so is PLEVA in itself, so that is not comforting to me.

That is all I found out. Let me know if you have more questions.

Shauna

Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Thursday May 15, 2008, 11:12:00 PM
Hi Shauna, please take a look at post 383, that is what a normal immune response, and an abnormal (autoimmune) response is. Think of these responses as being like "the switching on" of the defence mechanisms of our bodies.
Every cell of everything , carries self markers of the host, in animals and humans.  These cells of the host (your body)carrying *self *antigens, are normally ignored by the cells of the immune system. Any cell entering the body which of course does not have these markers , is therefore "foreign" and will trigger an immune response.
In a normal response an invader or something  from outside the body, does not carry markers on their cells, of your own body, (called Human Leukocyte Antigens, HLA's) and will be attacked and destroyed.
An autoimmune response is switched on in the same way, but it attacks cells which DO have these markers, in other words the response or the "switching on" of our defence system, is mounted against self cells. The response in this case stimulated by a combination of mutated genes, factors from outside the body, or inside , or a mixture of both. The mutated genes are transcribed into proteins and as the genes are faulty so are the proteins and each subsequent cell of that immune response malfunctions. The pathogenic result of that is the condition manifest.

Atopy is the same, except that this is a genetic predisposition to having an allergic / hypersensitivity  reaction to  things which are normally harmless. As a virus is usually harmful to a human body, I do not think  pleva or plc could be Atopic.
Not everyone carrying these mutated genes predisposing the person to autoimmunity, or atopy, or both! will ever have a reaction , they are just more likely to, if a specific combination of factors occurs, resulting in an autoimmune response, or if a person has the Atopic genetic predisposition, stimulated by a specific normally harmless allergen.   You can have both of course.
The literature on PLC and Pleva states in some articles that it is triggered by a virus, and that the majority are known to have some kind of Atopic condition. Atopy runs in families.
Dylan must therefore carry mutated genes predisposing him, in the presence of a combination of these genes and this particular virus to having this abnormal response. The pathogenesis of this response to the virus in Dylan  is obviously pleva. It might be a different virus altogether stimulating this response, resulting in pleva, in another person.

A virus, can stimulate any autoimmune condition, but only in a person carrying mutated genes predisposing them to autoimmunity.
A normal body substance can be  altered by the virus. For example, viruses, drugs, sunlight, or radiation may change a self protein's structure  (the HLA's as mentioned above) in a way that makes it seem foreign. A response is mounted, these genes transcribed, and then all the cells of that response malfunction.
Anything presented as foreign to Tcells and Bcells, is marked for destruction. The bcells produce antibodies , these are the soldiers which latch on to destroy the invader. In an autoimmune response the bcells (because they are stimulated by malfunctioning cells) are also malfunctioning, and they produce abnormal antibodies, (autoantibodies) which are capable of latching on to self cells carrying these markers which now appear foreign because of the virus.
Furthermore the Regulating Tcells also malfunctioning (due to the same reasons as the bcells) are unable to switch off and bring the response to an end, as in a normal immune response, therefore the whole abnormal response is in overdrive. The abnormal antibodies (Autoantibodies) which have latched on to the autoantigens  (self antigens  which were altered by the virus) because the production cannot be stopped, form veil like structures called immune complexes and can be seen deposited in the skin in some conditions such as my own.
Quote
I should let him take something to boost his immune system to rid his body of this virus.
Thats the last thing he needs Shauna it is already in overdrive! His Immune system you see is not deficient.  Immunodeficencies  occur when the body does not produce a component of the immune system from birth or ceases to function due to serious disease. You can read this in my blog near the beginning on the link "disorders of the immune system". 
The immune system is working very well, it's just that these particular genes simply carry this predisposition.
If its not an autoimmune condition then maybe Dylan has a genetic predisposition to having an allergic response to this specific virus? I remember you saying that the doctor said it had nothing to do with the immune system, but if it hasn't, then Dylan would not have this rash! Certainly it is an immune response to something, be it an autoimmune one or not. Was that ever clarified by the derm Shauna?
bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Friday May 16, 2008, 01:03:52 PM
May I just add to that above Shauna, in case I didn't make myself clear.
The virus will have been dealt with by this response by now, otherwise Dylan would be really ill, the virus having taken over. However that is not the case, Dylan in himself is perfectly healthy other than this rash affecting his skin, and this is because as yet the abnormal response has as yet not come to an end. These regulating Tcells need to receive the "signal" to stop the response. Even if it has stopped it takes a long time for the immune cells to clear away the debris. This is probably why the derm is saying it will burn itself out eventually. Does that make sense to you?
I don't know if immune complexes are seen in biopsy in pleva or plc, I'm sure they do , but I will check it out. Whenever a normal (or abnormal) antibody joins with an antigen ,(normal or abnormal) it marks it for destruction, by other cells of the immune system. This  Ab +Ag "joining"  is called  an "immune complex". An over production of autoantibody causes clusters of immune complexes amassed together like a "veil". These become deposited in the skin and of course inflammation and damage occurs.

Just a bit more as to how a virus can stimulate this response asI have already explained in my previous post.
Infectious agents are the most often cited environmental factors implicated as triggers of autoimmune diseases. Despite these leads, the exact mechanisms by which infection induces a particular autoimmune disease are unknown. An antigen of the micro-organism (virus ) may resemble a self antigen (Hla's) present on  cells of the body, but to just one particular set of cells, for eg. proteins of the skin. A cross-reactive immune response to the infecting micro-organism, causes immune-mediated damage to the cells of organs or skin. Cross-Reaction activates T and B cells. When the infection is under control, these cells may then turn against self antigens.
This phenomenon is referred to as molecular mimicry.
Molecular Mimicry occurs when a normal body substance is altered as explained in my previous post and above. 

Likewise an exogenous antigen may share structural similarities with certain self antigens ( HLA's); thus, any antibody produced against this antigen can also, in theory, bind to the host antigens, ( HLA's) and amplify the immune response.

Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Monday May 19, 2008, 02:07:11 PM
Hey guys! Hope you don't mind me joining with a few questions...

So my derm didn't exactly explain the big difference between pleva and PLC but he told me it was 'more than likely' pleva and that I should get over it and it will hopefully never come back. Can someone please explain the difference in diagnosis/prognosis?

Also, I've been reading a lot also saying that it's an autoimmune thingy... is that to say that the medication I was on right before I got it had nothing to do with the spots? My mother believes the medicine caused the pleva as does my boyfriend... and so did I until I read this. Now I'm think my genes are just basically messed up... is that correct? Or was it like...  a condition brought out because my body had an adverse reaction to the medication (which is what I thought happened)?

Though it may be something unrealistic right now is this something that could be helped with gene therapy if it is just messed up genes? I'm not a science-y person so maybe it's not even plausible, but I figured I might ask anyway.

Another thing I am confused about is that my spots don't turn into sores or anything, they just get dry and flake over and then they leave purpura... is that normal for this condition?

Thanks everyone.
:hugs:



Hi. Sounds like you're a teenager. Been there as a teenager with PLC. One of the frustrations I had was the  lack of real knowledge about Pleva/PLC. There is a lot of stuff about immune-this and immune-that ... but basically the doctors could only diagnose (identify) the syndrome via biopsy, and give a general prognosis (prediction) of four to 12 years, may clear up and come back, etc. As one doctor confessed to me, when you don't know the cause or cure, call it autoimmune and give it a big important-sounding name.

The only thing that ever worked for me was to get a suntan. Years later, a derm told me that that was the state of medical knowledge on cure, which they discovered by observing patients who came back from the beach with all their sores gone except those under the bathing suit.

Another derm told me I'd have to go to his office for special UV treatments at about $100 a pop. I went to a tanning salon instead, at $10 a pop, which worked fine. (Unfortunately, the beach doesn't catch the sores under the bathing suit, and what do you do in winter?) I found that I ddn't have to get brown as a nut, just get a light tan from once or twice a week in a booth. That doesn't present much of a risk from UV, and it does solve the problem.

After all, that's what you really want to do ... solve the problem, not understand it. Hope this helps.
Title: Re: Pityriasis Lichenoides Chronica
Post by: godlyrooted on Monday May 19, 2008, 08:45:50 PM
i have tha cure for plc, i had it for 4 years and i finally found a med that worked 4 me, its called doxycline hyclate. just take it for 3 months, one pill a day. and its cheap med 2 like 7 dallors for 30 pills. and when your takin durin the 3 months u need to know it will look worst 4 a min, cause when i was takin it i noticed it was spreadin in diff areas i never seen it spead before but i still took the med anyways, and after the three months pretty much as soon as i got off it, and them lesions stop. thank god no more of that. it worked for me so maybe it will work 4 u, it wouldn't hurt to try right. if u want to get rid of that cursed desease......
Title: Re: Pityriasis Lichenoides Chronica
Post by: galpal on Tuesday May 20, 2008, 03:20:14 AM
Hi Everyone,

I just checked out Dylan's  pics and they look just like my daughter's pics.  I posted a pic minus the plevers.  I did take some when they were at their worst but I'll have to see if I can find them-probably still in my camera.  Now we have the red/purple scars which can be quite large on the pleva sores.  The red scars turned white last summer.  She doesn't tan so the white spots weren't a big deal.  The plc spots aren't so noticeable. 

Some of the bad plevers left a chicken pox- like scar which have not gone away with time.  I still have my chix pox scars so I'm thinking that hers are permanent.  Next time her face is affected, I will get her to a tanning booth right away because the scarring is no fun.

Things look quiet right now.  Hope everyone is improving with the sun.  It is great that Godlyrooted had such a great response to the antibiotic.  My Doc said that 67 percent respond to the Erythro/Tetracyline treatment within 90 days (I remember being so sure we would be in that group!) so that would be him.  I'm assuming doxycline is similar due to the same suffix.

Chris
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Wednesday May 21, 2008, 07:06:08 PM
Hi.

So nice to read everyone's posts and different experiences with PLEVA/PLC. Dylan is still on erythro, and  has been since late January, so almost 4 months. My derm still says it is safe to keep him on and wants to until all the lesions are gone. I am just putting my trust in him. He has never told me the erythro is a cure though. He just said it cuts down on inflammation while the disease burns itself out. It may prevent the redness and scarring. Not sure on that though. I had never heard about the erythro working in 90 days. My derm just said some cases can be stubborn and hang around longer than others. I am sure Dylan will be clear this summer. The sun has already done wonders for his arms and legs. I only hope he will stay that way come fall/winter. If he looks like he did with his first outbreak, I may lose my mind. I cried daily during that time (never in front of him) and checked him all the time to see where new spots were forming. AH. It was so aweful.

Bunnie, thanks for your information. You are like a book. You have so much knowledge. Anytime I forget to ask the derm something at an app't, I just send it to you. Thanks so much.

Shauna



Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Wednesday May 21, 2008, 08:01:46 PM
Hi Shauna, the thing is did you understand it? I don't like asking that, because by doing so it is like presuming that people have not got the intelligence to understand it, and as you know, I never presume that, otherwise I would not bother to explain it. That presumimg attitude is a pet hate of mine! Doctors are notorious for it, they presume the patient cannot really understand the problem, so they give an overview, which the patient takes on board , but it is so easy to misunderstand what they are really saying, from a brief explanation. It isn't a brief subject!
That is the way I offer my support here, and one of the reasons why I believe it is so important to understand these processes. Had I personally not endeavoured to learn, I guess I would  be in a far sorrier state than now, (if that is possible!) I appreciate that everyone has a different approach to their illness however.
I have often said to my specialists, that it is a pity my disease was happening to me, because I cannot help but be fascinated by the process, and my own derm in particular has always replied, " Who better to learn than a person experiencing the processes of these abnormal responses?" His face lights up if I ask about anything in particular, he loves the fact that I am keen to understand. I even say "hold on , until I write that down!"
Anyway you did ask, so I hope it helped.
You have said something very poignant Shauna,
Quote
I am just putting my trust in him.
You have to shauna, when you are between a rock and hard place. You need somebody "on your side", understanding the problem and dealing with it in the best way possible for Dylan.
Quote
My derm just said some cases can be stubborn and hang around longer than others.
That occurs in many cases of all the different manifestations of these abnormal responses, and at least the derm is being honest with you.
Quote
I cried daily during that time (never in front of him) and checked him all the time to see where new spots were forming.

Aw-w Shauna, it must be awful watching and caring for a child with these conditions, but all you mums are coping magnificently aren't you? Thats because you are " mummy" and you have to. I never felt very efficient  nursing children, (although I spent 2 years night duty nursing children with severe abnormalities, bless them,)  I spent most of my time in tears! What made it worse I was pregnant myself toward the end of those 2 years and the reason I left of course.
Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Thursday May 22, 2008, 09:18:32 PM
Bunnie,

I, for the most part, understood your posts. I had to read and re-read and re-read again. I checked out #383 as you suggested as well. So, from what you wrote, Dylan's immune system is over-functioning, attacking invaders that really are not invaders. I get that. I mean, he would be sick if his immune system had not kicked out the virus - if it was a virus that triggered this. So, how or what gives the Tcells the signal to stop the abnormal response? I just feel like I am not doing enough to help his little body get rid of this. I know the doc keep saying to get in the sun and let it "run its course" and burn itself out. That is hard to do as a mom. I just feel like I need to be doing more.

And, I read a bit of your post under your condition in regards to Grayson. His mom was asking about allergies. Could Dylan have an allergy that causes the PLEVA to flare up at times? Should I have him tested or keep a food diary? Just curious.

Anyway, our pool in our neighborhood is about to open this weekend. I plan on having Dylan there daily, if possible. Hope that helps.

Shauna

Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Friday May 23, 2008, 12:36:54 PM
I wish to Thank you Shauna for reading those long posts, and endeavouring to understand these processes. You are absolutely correct, and I'm so pleased you have realised it,that is the way I learn too, reading it over and over, checking and rechecking. The reason I give the info, is because the knowledge answers all the obvious questions, as to "why". You have obviously understood what I wrote, I made it as simple as possible, the danger of doing that though is that people can often misinterperate the simple explanation, as I said in a previous post. It is a very complicated subject, and of course as it is in research still, we can only learn where science is at , at this point.
You have made some very valid points which all sufferers of autoimmune disease or Atopy, actually mention to the derm at some point.
Quote
So, from what you wrote, Dylan's immune system is over-functioning, attacking invaders that really are not invaders. I get that. I mean, he would be sick if his immune system had not kicked out the virus - if it was a virus that triggered this.
Precisely Shauna.
Quote
So, how or what gives the Tcells the signal to stop the abnormal response?
Thats what scientists are in the process of discovering shauna! If only it was known how to stop it! 
Under normal circumstances, these  regulating/suppressor Tcells, through chemically signalling bring any immune response to an end. You see all these cells of the immune system not just Tcells,
 "communicate and interact" with one another ,by releasing chemicals which act as a signal to the other cell in question, causing them to be activated, thereby releasing other cells, or undergoing another process, killing them outright, or simply sending them off to do another job. Some of these cells can even give themselves a signal to commit suicide!
If you wish to learn a bit more, do just what you did before Shauna, take your time, don't be put off by sometimes unpronouncable words, just take from it what you can.
http://wassail-allthatilove.blogspot.com/
Scroll down to Tcells. Forget about the numbered and lettered markers (they only identify the gene) for the present, just read the bits inbetween.
Read in particular, the types of Tcell which start as 1) helper Tcells. Scroll down to no.2) and especially 5) 6) and 7). Then scrolling further, read "Disorders of the Immune System". It explainf everything that can go wrong, and to which cell processes, research is specifically directed.
Quote
I just feel like I am not doing enough to help his little body get rid of this. I know the doc keep saying to get in the sun and let it "run its course" and burn itself out. That is hard to do as a mom. I just feel like I need to be doing more.
Indeed it is hard for everybody Shauna, and that is why people often try other non-medical treatments. I have done it myself! It is the innate need to help one's self. Acceptance is very hard Shauna, especially for a mother, but there is no other choice. If you can try to move your mind-set from that, acceptance then becomes a positive reaction. I personally, unable to help myself in any other way, tried to remove that dreadful feeling of hopelessness really, by putting all my energy into learning all that I could about these two subjects, and the knowledge "empowered" me. I trust you get my meaning? The more I could understand and discuss these processes with my derm, the more open and interested he became in discussing it with me, and indeed the many other specialists too, involved in my case. As nearly all of them have said at some point or other, "people with rare conditions must often become their own doctor in the abscence of their specialist" How very true that is.
However, whether or not it is an autoimmune disease, Atopy, or a genetic allergy to a specific virus, this reaction is abnormal, and until a drug can be found to alter the transcription of these genes then nobody can have a solution to their specific problem. The reaction though will stop exactly as the derm says, it will burn out. I know my derm believes (through his experience ) that my condition is very slowly burning out now.
Quote
Could Dylan have an allergy that causes the PLEVA to flare up at times? Should I have him tested or keep a food diary? Just curious.
Well of course that can only be answered by Dylan's derm Shauna. Certainly, any allergy to anything can exascerbate any other skin problem , causing it to flare, BUT remember, if the condition is autoimmune or atopic, it will of itself, being a symptom of genetic predisposition alone, wax and wane in severity, idiopathically, ( spontaneous, of itself) or have long or short periods of remission; another main reason why people are often fooled into thinking that specific diets have worked for them, when in fact it is only the way autoimmunity and atopy function. ( please don't anybody reading jump down my throat at that last sentence, that is the view of medical science, people have the right to believe what they want, and frankly I couldn't care less which path they choose.)The thing is Shauna, Dylan never showed a reaction to anything he ate  prior to this outbreak did he? and unless you have drastically altered his diet then that cannot be a factor can it? To eat healthily of course goes without saying.
kind regards Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Friday May 23, 2008, 10:29:18 PM
Thanks so much Bunnie. You should go to med school. It sounds like you really love learning about this stuff. Me, not so much. I was not a fan of science classes in school. I am more interested now because of Dylan. But, to sit and read and research like you, no way. I will just ask you questions and let you tell me the important stuff.  ;)

So, I think I may keep a food diary just to see if he does flare up with certain foods. The doc once told me that he may not have an allergy to a certain food but just a bit of an intolerence. ??

Anyway, need to run. Thanks again and I will keep you informed of his condition as is "waxes and wanes."

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: anndrew on Wednesday May 28, 2008, 03:37:10 AM
Has anyone on this board tried taking bromelain for three months?  I just read a study in the magazine Life Extension.
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Wednesday May 28, 2008, 11:14:57 AM
Hi Shauna,
Quote
he may not have an allergy to a certain food but just a bit of an intolerence. ??
An "intolerance" to something would have shown up before now, and any response would have manifested on its own. You see anything amiss would show up in Dylans blood specs. A full blood spec is done regulary usually, with these conditions, this is the map and main diagnostic tool of the physician.
If Dylan or anybody, had any intolerance , allergy, anything, it would be apparant. If anybody needed supplements or essential nutrients, the deficiency would show up in his blood specs.

There is no well founded scientific tests done on this stuff as noted in this link.
http://www.nlm.nih.gov/medlineplus/druginfo/natural/patient-bromelain.html
A quote from one of the links I have left. He is absolutely bang on!
Quote
Some facts:
a) There is something called levels of evidence, a universally accepted system of evaluating studies, according to their methodology and hence the validity of their results: This study is a systematic review (meta analysis) hence Level 1 - the highest level of evidence
 b) Cochrane collaboration is the most respected source of clinical evidence worldwide, and set the standards , 20 years ago, for systematic reviews. It is a non profit , international organisation.
If these essential nutrients are all at normal levels why take supplements? Wasting money, and more than likely causing yourself more harm than good! It's crazy!
To give a child them I would say is out of the question, the doctor would soon add them if Dylan or anybody needed them.
Furthermore it is dangerous  in the long term to "doctor" yourself when anyone has an obvious condition like this. Treatment is based on the body as is, but if you go adding stuff, you are altering what is known about the patient. I know for a fact that some derms when informed that the patient is taking this or that supplements , just say its ok. Usually this is because what they are taking is insignificant, but as a placebo effect it does the patient good to allow them to continue thinking that they are "helping".  I have asked numerous specialists this many times.

However, here in the UK at present, there is much in the media about people doctoring themselves with these supplements, and proving how dangerous it can be in the long term. Please note the dates!
http://www.independent.co.uk/life-style/health-and-wellbeing/health-news/vitamin-supplements-do-us-no-good-and-may-be-harmful-809607.html
http://www.bupa.co.uk/health_information/html/health_news/300408_vitamin_supplements.html
please note that BUPA is the main private insurers for medical care in the UK (for those who prefer to go private and not use the NHS,( the only difference they get is a private room, and to jump the queue!)
http://www.bbc.co.uk/sn/tvradio/programmes/horizon/vitamins_trans.shtml
The BBC horizon programme  (a very popular research  programme in the UK) above link, very interesting!
They are also noted to alter the processes of medication, and very seriously in the case of some of them.

You ARE helping Dylan Shauna, simply by being sensible about this, and checking the known facts about these processes. Here is an explanation of the differences between an allergy and an intolerance but please note that these symptoms are very obvious!
Food intolerance is a chemical reaction (This refers to body chemical reactions, not chemicals as we normally refer to chemicals!  A more understandable explanation would be maybe acting  as  stimuli or stimulus)
Food intolerance is a ‘chemical’ reaction that some people have after eating or drinking some foods; it is not an immune response. (a normal response) Food intolerance has been associated with asthma, chronic fatigue syndrome and irritable bowel syndrome (IBS). Food intolerance is much more common than food allergy. The word "association" in this context means it is "sometimes seen as a symptom of."
The Symptoms can be similar.....
It can be difficult to tell the difference between the symptoms of food allergy and food intolerance. Usually symptoms caused by food allergy develop very soon after consuming the food but, while symptoms caused by food intolerance can be immediate, they may also take 12-24 hours to develop. Food intolerance reactions are usually related to the amount of the food consumed. They may not occur until a certain amount (threshold level) of the food is eaten, but this amount varies for each person.
Symptoms of food intolerance can include:
Nervousness, tremor
Sweating
Palpitations
Rapid breathing
Headache, migraine
Diarrhoea
Burning sensations on the skin
Tightness across the face and chest
Breathing problems - asthma-like symptoms
Allergy-like reactions.
Any of these would be clearly visible, both physically and pathologically.
So unless any of this is happening, then Dylan is ok.
Title: Re: Pityriasis Lichenoides Chronica
Post by: anndrew on Monday June 02, 2008, 12:12:43 AM
Supplements.  One could see a nutritionist, like I do,  and take supplements.  I started a month ago and things seem better. 
Title: Re: Pityriasis Lichenoides Chronica
Post by: ely0325 on Friday June 06, 2008, 01:13:24 PM
Hi Everyone!

I'm a new here and I was diagnosed with PLC one year ago. I am now 21 and it's so difficult to live with this rare skin disease. I've tried tons of creams, antibiotics including tetracycline and prednisone but it seemed to make it worst, and I've done phototherapy which seemed to help a little. I actually stopped tanning and they seem to reappear again. How long does this usually last? and what would be the bestway to survive during the summer? My rashes cover every part of my body except my face and neck, I started getting some there but phototherapy actually stopped it from growing. I feel that it has affected my social life and it is very stressful. I'm glad to see that I am not the only one but I am very saddened to know that so many suffer from rare diseases like this one. At the time I got PLC I noticed I lost a lot of weight, did this happen to anyone? I'll appreciate f anyone can help me with this situation. I heard that skin rashes are affected by a bad liver, is it true???
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Friday June 06, 2008, 01:48:00 PM
Hi Everyone!

I'm a new here and I was diagnosed with PLC one year ago. I am now 21 and it's so difficult to live with this rare skin disease. I've tried tons of creams, antibiotics including tetracycline and prednisone but it seemed to make it worst, and I've done phototherapy which seemed to help a little. I actually stopped tanning and they seem to reappear again. How long does this usually last? and what would be the bestway to survive during the summer? My rashes cover every part of my body except my face and neck, I started getting some there but phototherapy actually stopped it from growing. I feel that it has affected my social life and it is very stressful. I'm glad to see that I am not the only one but I am very saddened to know that so many suffer from rare diseases like this one. At the time I got PLC I noticed I lost a lot of weight, did this happen to anyone? I'll appreciate f anyone can help me with this situation. I heard that skin rashes are affected by a bad liver, is it true???


Hey ely,

I'm sure a bad liver could cause some rashes to an extent depending on the severity of the damage or mutations. But I think PLC is caused by a different thing all together. Stress is bad, as it increasings your cortisol levels in your blood and this can have numerous effects on your body. So make sure you drink lots of herbal teas, listen to Tchaikovsky and relax. Getting lots of sun is the best thing, along with a good diet, foods with lowGI and high in fibre are usually good. I would give the antibiotics another go, maybe at a higher dosage. Make sure you are taking them correctly, I think some require you to take them with food. If you don't they will pass through unabsorbed. I didn't have any spots on my face or neck either, but my neck did get a few now and then which didn't last very long, so whats up with that? lol.

All the best,
PLC4ME
Title: Re: Pityriasis Lichenoides Chronica
Post by: Samuel9817 on Friday June 06, 2008, 07:51:59 PM
Hi Everyone!

I'm a new here and I was diagnosed with PLC one year ago. I am now 21 and it's so difficult to live with this rare skin disease. I've tried tons of creams, antibiotics including tetracycline and prednisone but it seemed to make it worst, and I've done phototherapy which seemed to help a little. I actually stopped tanning and they seem to reappear again. How long does this usually last? and what would be the bestway to survive during the summer? My rashes cover every part of my body except my face and neck, I started getting some there but phototherapy actually stopped it from growing. I feel that it has affected my social life and it is very stressful. I'm glad to see that I am not the only one but I am very saddened to know that so many suffer from rare diseases like this one. At the time I got PLC I noticed I lost a lot of weight, did this happen to anyone? I'll appreciate f anyone can help me with this situation. I heard that skin rashes are affected by a bad liver, is it true???


Hey ely,

I'm sure a bad liver could cause some rashes to an extent depending on the severity of the damage or mutations. But I think PLC is caused by a different thing all together. Stress is bad, as it increasings your cortisol levels in your blood and this can have numerous effects on your body. So make sure you drink lots of herbal teas, listen to Tchaikovsky and relax. Getting lots of sun is the best thing, along with a good diet, foods with lowGI and high in fibre are usually good. I would give the antibiotics another go, maybe at a higher dosage. Make sure you are taking them correctly, I think some require you to take them with food. If you don't they will pass through unabsorbed. I didn't have any spots on my face or neck either, but my neck did get a few now and then which didn't last very long, so whats up with that? lol.

All the best,
PLC4ME


I agree with plc4me, I have had PLC for a while now also. I have been on Tetracycline for a while now. I recently told my Dermatologist that maybe I should stop taking it because it doesn't seem to work. He declined and I continued taking it, it now seems to be working . Make sure you take it with a meal , I noticed that from time to time I loose weight and appetite. Also you might want to try Palmers Cocoa Butter which had helped me with the dark spots that remain .  Good Luck!!!!
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Friday June 06, 2008, 08:35:56 PM
Hi Everyone!

I'm a new here and I was diagnosed with PLC one year ago. I am now 21 and it's so difficult to live with this rare skin disease. I've tried tons of creams, antibiotics including tetracycline and prednisone but it seemed to make it worst, and I've done phototherapy which seemed to help a little. I actually stopped tanning and they seem to reappear again. How long does this usually last? and what would be the bestway to survive during the summer? My rashes cover every part of my body except my face and neck, I started getting some there but phototherapy actually stopped it from growing. I feel that it has affected my social life and it is very stressful. I'm glad to see that I am not the only one but I am very saddened to know that so many suffer from rare diseases like this one. At the time I got PLC I noticed I lost a lot of weight, did this happen to anyone? I'll appreciate f anyone can help me with this situation. I heard that skin rashes are affected by a bad liver, is it true???


Phototherapy is the ONLY thing that worked for me. It is also the only thing that is proven to work. You will need to continue it until the PLC goes into permanent remission, anywhere from 4 to 12 years. Mine lasted ten. However, phototherapy isn't so bad. You spend ten minutes twice a week in an ordinary tanning booth, and you're nicely tanned all over with no ulcers. That should help your social life. If twice a week doesn't cut it, try three times. You may have to increase exposure time as you tan.

Getting a light tan without a burn holds very little risk. Like many things in life, moderation is the key.

Antibiotics and creams didn't work, and reports of partial success are probably due to the fact that PLC comes and goes.
Title: Re: Pityriasis Lichenoides Chronica
Post by: ely0325 on Monday June 09, 2008, 02:41:42 PM
Thank you very much for your responses!! :D I've been tanning outside my backyard and I hope that would help. BLX42, you said yours lasted 10 years, was it on/off or you had it the whole time and when did you start with phototherapy.I am very curious to know how it works and why does it last so long. Mine actually started getting red again this week and I believe it can be because of the hot weather but I am not really sure. How did you deal with it for so long and if you don't mind me asking, how old were you were whenvit first started happening?
Title: Re: Pityriasis Lichenoides Chronica
Post by: ely0325 on Monday June 09, 2008, 02:43:10 PM
I am sorry guys the font it came out a little too light lol
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Monday June 09, 2008, 07:40:53 PM
hi elyo325, welcome to skincell!
Quote
.I am very curious to know how it works and why does it last so long.
Elyo, if you read my posts on here, it will answer that question for you. You may ask " why is she answering questions on plc when she doesn't have it herself?" The reasons are twofold elyo ...
1) All of these type of conditions,including my own are either Autoimmune diseases or Atopic conditions.
Under each of those headings come  a myriad of skin diseases, each manifesting differently from one another, and also more severe or less severe in each individual. There are over 80 diseases listed under the heading of autoimmunity alone for eg.
Both headings of autoimmunity and atopic conditions are caused through mutated genes predisposing you to ever having this abnormal immune response, in the presence of a combination of particular factors in you. Each different condition that stems from either of these headings is simply the pathogenic result, of the abnormal immune response in each individual, which is caused through a combination of mutated genes and enviromental factors like viruses, radiation,  drugs etc. and/or hormones or other gland secretions in the body. Only people who have mutated genes carrying this predisposition, can ever get these conditions.
2)I am particulary interested in medical science, and the immune system.
This is what these autoimmune and atopic conditions do, flare and subside, or  disappearing completely for a time and then coming back years and years later sometimes, as mine did. This flaring and subsiding is not a specific symptom of the condition, but of autoimmunity or atopy. Some of these conditions are self limiting, which I understand pleva is one of them,(acute meaning of short duration) but PLC is not, (hence the word Chronica, of long duration). 
Hope this helps
regards Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Wednesday June 11, 2008, 01:23:12 AM
Hi ely0325,

I am so sorry to hear you have this skin condition. My 3 year old son has it; and, it has been very hard watching him have to suffer with it. At least for him though, the appearance does not bother him right now. He knows he has "spots" and is cool with it. Sometimes other kids ask him what he has. That bothers me, but not him. He just says, "Oh, those are my bumps. They don't hurt." I am sure the situation is a bit different for you as you are not a child. I am so very sorry. The bright side is that this condition is supposed to have a definite end. My son's derm says that while he could have it for a few years; he will not have it for life. He believes it will burn itself out soon, and that will be the end of it. I hope it does.

For Dylan, the natural sunlight has been the best thing for him. As soon as he started getting sun, the spots started disappearing - leaving little white pigmentation marks. I think those will fade with time. If you take a look at the gallery, I posted pic's of him when the disease was at its worst. His arms were covered. Now, they are pretty much clear. And, now, the spots he has left are very small and pink rather than large, crusty, and red.

His first outbreak was terrible. Once those started fading, the next outbreak was significantly less. So, I hope in your case as well, you will start to see the spots fade and less and less outbreaks.

My advice is to get a good derm who knows about PLEVA and has seen it before. Listen to him/her and do what he says. Take the meds; go to the light box; whatever. Dylan has been on erythromycin for almost 5 months now. I hate it but trust the derm. Listen to Bunnie too. She is so knowledgeable. And, try to get some natural sunlight. You may think the spots look worse at first but keep going out in the sun. They will fade.

Good luck.

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Thursday June 12, 2008, 01:48:46 AM
Hi all,

I was writing to find out how everyone's skin seems to react with the sunlight? Dylan has been outside and at the pool everyday for almost 2 weeks now. His skin is looking great but still seems to get outbreaks. I was hoping the sun would clear the spots. I mean, he looks good. I was just thinking the sun would do more. The areas that are tan - the white spots are very visible. The areas covered by his suit are still spotty.

Anyway, just curious what everyone else's experience has been with sun exposure.

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Thursday June 12, 2008, 11:56:22 AM
Hi Shauna! just popped by to say how pleased I am to hear that Dylan has improved somewhat. It's a slow process Shauna, sadly. My prayers for you both.
Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Saturday June 14, 2008, 02:39:33 PM
Greetings All!

Summer days are upon us and, though we all have our pros and cons about the sunlight and the PLC, I know for a fact with my PLC, a little sunning every day does great. However, to burn is to suffer the might fire, itch and brimstones of the PLC guards. I learned that the hard way.

Cool showers, don't ex foliate too much, don't wash your natural oils from your hair.

The heat, however, kills me - I have MS, so I am sure to spend no more than 15 min or so in the sun.

Light, water-based creams are best kept on at all times. When outside, sunscreen a is a must.

I tried the program, "Eat for your blood type" and it did nothing for me, but I inject large amounts of interferon each week and take several other liver/kidney affecting drugs. So, who knows. These are just a few things I have learned.

In the shower, while still wet, I use a layer of baby oil gel to keep the moisture in my skin as long as is possible.

Best of luck to all! Have a safe, happy holiday and stay in touch with your derms! My Plc continues to morph between PLC and Eczema and sometimes both at the same time.

But, at 52 I feel great knowing I'll outgrow this at puberty! LOL!

Regards,
Elseaeff
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Saturday June 14, 2008, 09:31:28 PM
elseaeff, you are making good sense, giving good advice, and showing courage in the face of adversity. I have been on interferon too as you know, and I know it makes you feel like the walking dead sometimes, but some of us don't really have a choice but to take much harsher meds. The reason being that these conditions affect everyone differently, at different levels of severity and longevity. The heat kills me too, the summer is unbearable, even here in Britain!
Quote
I tried the program, "Eat for your blood type"
The people who write this stuff should be banned by law in my opinion.
Quote
I feel great knowing I'll outgrow this at puberty!
Only children I'm afraid!
my very best wishes to you,
bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: Pdilly on Thursday June 19, 2008, 06:01:54 PM
This is my first time on the board.  I was diagnosed 6 weeks ago.  Went through a bunch of tests to see if I had any bad viruses, Hep, HIV etc.   Nothing came back that they say triggered it that they can find.  My derm put my on tetracycline (I probably miss spelled that one) and go out when I can for 5-10 mintues of sun.  Its been raining al ot so I have not done much of that.   Now that the medication is gone I noticed that I have a few new bumps.  The anitbiotic did get rid of all that was not real bad but those real bad spots were real small.  I have a derm appointment today.  Not sure if I sould go back on the med or wait until winter time when the sun does not shine as much.  I hate this and hope that it goes away and not come back.
Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Tuesday July 08, 2008, 06:36:28 AM
Hi:

I am new to this particular pleva group. I was in another online group that got shut down ;). I am so glad to hear about everyone's treatments as it gives me some new things to try. I have had pleva for 6 years. I have been getting light treatments for nearly a year now and they certainly help things stay under control. I go in about once a week. During the last few months my derm has started me a Z pack every three weeks. I am actually seeing results. I started taking Spirulina along with my regular vitamins and I am getting plenty of sun. I am a teacher and I am off work right now, so the sleep, sun, vitamins and low stress are certainly helping....and I have the best tan I have ever had (with the exception of the little white scars).
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Thursday July 10, 2008, 12:34:40 PM
Hi Linda,

I read with interest your post on zpack.  My daughter has had pityriasis lichenoides for 8 years now.  She will be ten this month.  I read an article about using zpack/azithromycin as a treatment for PL.  I asked my derm about it.  He prescribed it for my daughter.  Three weeks ago, she started.  It is weird, because the treatment is "pulsed".  She takes five days of pills on "week 1" and then has a break.  On week 3, she takes another  5 day course.  He said we should give it at least two or three months, since even when you have old spots, they take long to fade.  I cannot tell if it is making a difference, because my daughter is getting some sun now, with summer swimming, etc...  I did think that her trunk area, which obviously sees little if any sun, did look better, however, it could be wishful thinking.  I think I will be better able to judge in another month or so.  In that study, a 5 year old had to complete five rounds for remission (over a course of 2 1/2 months).  The other patient had remission in a month (just two rounds), and was still PL free six months later.  Encouraging.  You said you are only getting zpack every three weeks.  Once a month?  Just curious.  What did your doc say about the zpack/PL connnection?  Thanks,

J
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Thursday July 10, 2008, 08:07:57 PM
Hi everyone, I just wondered lindadiane if your derm knows you are supplementing the treatment?
Quote
During the last few months my derm has started me a Z pack every three weeks. I am actually seeing results. I started taking Spirulina along with my regular vitamins

This clouds the issue for a derm, as often vitamins and supplements can alter the efficiency of the medicine, and can in some cases prove very dangerous, either by doubling the effects of the medicine or causing it not to work as well.
If you were deficient in any essential nutrients it would show up in your blood specs. Your blood is the main diagnostic tool for any physician, and his treatment is often based on it.
Adding to the treatment, or "doctoring yourself" is a huge "no no" here in the UK, and there has been much in the media about this lately, warning people of the long term dangers, and for those on drug treatments in particular.
Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Thursday July 10, 2008, 11:11:13 PM
HI J & Bunnie:

J, I am taking the Z pack every three weeks. I just finished the 3rd round and have not noticed any new croppings....I am hopeful, but also not sure as I also have been getting a great deal of sun. We live in Los Angeles and I have been floating in the pool. Bunnie, I did not start the Spirulina until one week after the Z pack. I will hold off on that because I would like to know, which, if anything is actually working. Thanks for your input! Right now I have what I term bumps.There is no blister, they are older plevas, they are white but slightly elevated. J does your daughter have scarring from hers? I also have some minor residual purple scars which only tells me I have had the chronic and acute versions. Like I said, my tan is great but I have little white bumps which I feel self-conscious about so I wear long sleeves and pants here L.A. in 100 degree weather.
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Friday July 11, 2008, 10:47:34 AM
Hi Lindadiane,
Quote
I also have some minor residual purple scars which only tells me I have had the chronic and acute versions.
You can only have one or the other LDiane. The medical terminology "chronic" and "acute" bears no relevence at all to disease severity.

Chronic means:- marked by long duration or frequent recurrence ,and also indicates indefinite duration or virtually no change.

Acute means :-Abrupt onset, in reference to a disease. Acute often also connotes an illness that is of short duration, rapidly progressive, and in need of urgent care. It is also a measure of the time scale of a disease and is in contrast to "subacute" and "chronic."

Subacute indicates a longer duration or less rapid change.

bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Friday July 11, 2008, 04:00:51 PM
Hi Lindadiane,

My daughter has the chronic version of PL (pityriasis lichenoides chronica), which is basically the same as PLEVA except the papules are not necrotic or crusty.  They look "less angry".  Therefore, she has never had scarring from her PL, however, when she gets some sun, and it helps fade out, with a slight colour, the spots look pale (hypopigmentation).  This eventually evens out over time. 

Your acute version of PL vs. the chronic version:  both are considered the same disease, except in chronic, the lesions are "milder" and not crusty.  As far as duration goes, for this condition, in a recent study of about 100 PL cases over many years, the duration of PLEVA is only a few months shorter than the duration of PLC.  The range of the condition according to the study of over 100 PL cases (I cited this earlier in our thread) can range anywhere from a few months to as long as twelve years or so. 

We have a pool too.  She has only been on zpack for about three weeks (just two five day rounds).  We live in sunny FL, and so it is hard to tell which lesions are fading out because of sun, etc...  Even when she gets the spots, they take in my estimate 6-8 weeks to fade out.  She still has spots obviously (sun can't eliminate anything), but I cannot tell at this point if they are "new spots" or still the old ones.  I hope the zpack will help, but, I think I will be able to better judge in a couple of months.  How long have you been on it?  At least you live in a sunny UV climate too.  We used to live in Boston, and in the winter it would be worse; however, of course, she was always covered up from the cold, so in that regard, it was "not as noticeable".  But it would be pretty extensive.  Even in the summer with FL sun, she is never PLC free.  But it is quite an improvement. 

Take care,

J
Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Tuesday July 15, 2008, 03:52:32 PM
Hi Bunnie & J - Sorry it took so long for me to respond but things have been busy. I know the definition of chronic and acute. I hold a nursing license in the State of California. I have seen 3 different derms and t they told me I had both types.  Pleva, like other skin conditons, can morph from one form to another. This is the reason they will re-biospy the bumps over the years because it can also morph into other things like cancer, etc. My derm said the reason they use the antibiotic is not to curb infection but to help with inflammation. Evidently the antibiotics, like Doxycycline, will help the inflammed follicle shrink. One of the doctors I saw also told me they we having great luck using retenoids and psoriasis meds. However, the side effects sounded so bad, like hair loss and nosebleeds, that I decided to ride it out. My present derm has a couple of other Pleva cases, not as bad as mine, and does a great deal of research. He said there have been several cases where the Z pack works but you have to do 6 or 7 rounds. I was told the medication stays in your system for up to 2 weeks after you complete the 5 days and that is why he wanted me to take it every 2 - 3 weeks after I finish. Also, I have noticed that the bumps get angry red and VERY itchy the week before my period so we were also sort of following the menstrual cycle as well.  I am 51 and all this began after I went off birth control pills and enter perimenpause and as my hormones have gotten wackier, my rash has gotten worse. I love all your info and the fact that you are here! 
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Tuesday July 15, 2008, 04:24:52 PM
Hi lindadiane,
Quote
Pleva, like other skin conditons, can morph from one form to another.
That is very true. Although from what I understand, you cannot have both at the same time, one can certainly morph into another. Unless of course they are referring to the appearance of one type to the other, by using the words acute and chronic, as a type , which is a bit confusing, and not really accurate.
It isn't 100% certain whether or not my own condition has morphed like this. I was originally diagnosed with Linear IgA disease, but a couple of years ago a new test was developed in Japan, which was carried out on myself, and it turned out I have a rare form of Linear Iga, a cross between Liga and EBA. (see profile)
bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: galpal on Saturday July 26, 2008, 05:33:32 PM
Hi Everyone,

I am very interested to hear how the Zpacks are going.  I'd love to read the study if anyone knows the link.  We live in Boston and my daughter gets hit really hard over the winter.  For some reason, it didn't get really bad this year until end of Feb.  She is still getting a few even with daily sun which doesn't bode well for fall/winter.  I will try the Zpack  at the first sign of a big outbreak.  My daughter sees a derm at Boston Children's every six months and she has that strange mixture of the PLC and PLEVA also.  The acute plevers have the central necrosis and can take 4-6 weeks to resolve and leave a chicken pox like scar and hypopigmentation.  I've tried topical creams to help the scarring but no luck yet.  The PLC spots leave the hypopigmentation but don't last as long and don't leave a pox scar on my daughter.  Terminology aside, I understand that you can have both. 

Happy Dot-Free Summer!
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Sunday July 27, 2008, 02:26:22 AM
Ok, so I am wondering about the PLC/PLEVA lesions. I know PLC is chronic and PLEVA is acute. I also know the PLEVA lesions tend to look worse and last longer than the PLC ones. But, how does one know when PLEVA has changed into PLC or vice versa. My son's derm has started referring to his condition as the chronic form simply because he has had it since last December. But, some of his lesions are the "angry" ones that are large with the scab or crusted center that take a while to heal. He has smaller lesions too that seem to come and go. So, do you think he has both types of conditions or are they one in the same? I guess it does not really matter in the end. I mean, he has a chronic skin condition either way. I am just still holding out that there will be an end to it soon.

Thanks,

Shauna (Dylan's mom)
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Sunday July 27, 2008, 05:39:42 PM
Hi All,

My daughter has had three rounds (twice a month) of zpack. She still has PLC spots; it is too soon to tell if it is helping, since she is also getting sun.  I am told to give her a total of six rounds (three months) and then have a look.  If there are still quite alot of lesions (on the less "sunny areas" such as her trunk), I will stop.  We started our first round nearly six weeks ago. 

I understand that PLEVAs also carry the less angry (no scab/necrosis) PLC lesions.  It is the same condition.  PLEVA people have both types of lesions.  He is calling it chronic simply because, as you've said, it has been going on for months; but the lesions themselves, individually can be either acute or chronic.  My daughter has never had an acute version of a lesion.  They are always the chronic version.  Even so, having the "milder version", over her whole body (esp. the non-sun exposed areas and upper backs of legs, etc..), she can have in the low hundreds, I think.  She swims in our pool.  It helps alot, but they are a constant presence.  I also notice that after coming out of water (pool, shower, bath), it brings the spots out alot, making them more inflamed/angry looking, and more extensive.  By morning, they are back to looking less inflamed. 

Galpal, how old is your daughter?  I saw what I think was her picture on your avatar.  Mine just turned 10.  When we livedi n Boston, we used to go toGellis once a year who I loved. 

Sincerely,

J
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Monday July 28, 2008, 02:42:44 AM
Hi all,

I was just talking with a friend of mine who was asking about Dylan. I told her that his skin has much improved with the daily exposure to the sunlight. She wondered if maybe he had some sort of vitamin D deficiency since that is what seems to be helping his skin. I know the derm would have know about that or that would have shown up in his bloodwork, but I just thought I would see what y'all thought about that.

Thanks for the explanation J about the PLEVA/PLC. Some of Dylan's lesions do seem to appear and disappear within a couple of days. I guess those would be considered the PLEVA's and the ones that take weeks to heal are PLC's. I keep wishing they would find it related to some food or allergy or something we could just eliminate and make the bumps go away. I was so encouraged from reading MJ's story of her son - the PLEVA burned out within 3 months. I am not thinking that is the norm with this condition though. I really hope the Z-pack helps your daughter's. I know y'all have been dealing with this for so long. Maybe puberty though. It does not help when people keep asking what it is and what causes it - even family. My mom keeps asking when it is going to go away and I should go to an allergist for another opinion. Very frustrating.

Anyway, Dylan is doing fine. He keeps praying for God to take the bumps away at the end of summer. He was so excited when they started disappearing. The white marks are pretty noticeable though. Do those fade with time?

Well, thanks for the input and info. Good luck.

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Monday July 28, 2008, 05:40:33 AM
Hi Everyone:

I am on my third Z pack and I am not noticing any new Plevas. The old ones are drying up. They seem to kinda of crust over, sometimes they get a tough top coat that eventually peels off and then they heal. Anyway, my husband said tonight, gee your back looks really good. Which is amazing because I have them in the 100s too.I am seeing a great deal of scarring also. The vitamin D - I brought this up on another site many months ago. Then someone said they had blood work done and were deficient in D and B12. I am lactose intolerant so I have never taken in a great deal of milk. I am on a multivitamin and also take extra D because my internist said at my age, 51, it's a good idea. No mention of a deficiency. The other thing many people had in common with this was an elevated cholesterol level. I was then worried about liver functions but all my tests were normal.

I am also getting alot of sun which causes the liver to process vit D, but also gets rid of the bumps the best..natural sunlight. My derm says it reduces inflammation but they do not know why exactly.

Anyway, I will continue to keep you posted. I feel really bad for all your little ones. This is hard to deal with as an adult. I cannot imagine being a pre-teen and having to deal with it.

Take care and keep posting!
Linda
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Monday July 28, 2008, 09:33:02 AM
Hi Everyone, I don't wish to butt in, but on the question of Vit D.....
Vit D is shown to be in reduced levels of nearly all diseases and autoimmune disease, and it was hypothesised that supplementing vit D may improve autoimmune diseases. However recent studies (please take particular note of the date of these studies) has shown quite a different picture. Read post 2.
http://www.skincell.org/community/index.php/topic,23891.0.html
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Monday July 28, 2008, 12:27:52 PM
Hi Shauna and All,

My daughter Likealways been an avid vit d milk drinker.  I understand that vitamin D is perhaps antiinflammatory, however, as bunnie pointed out, studies are varying.  (I read a very interesting article in Scientific American about it, but can't remember all the details to give a good explanation).  UV radiation alone helps healing with lots of things ( and of course, as we all know, the opposite effect of too much sun).  Don't worry, Shauna about the white spots.  (aka hypopigmentation).  My daughter gets these (looks like a leopard in reverse!  Alrightg, slightly exagerated, but you get the point).  It takes, in my experience, several weeks perhaps or so to even out.  The pigment (melanin) is deficient in a previously inflamed area, and needs to replace.  I would take the flattened whitish patches to an inflamed red spot any day.  Years ago I asked my doc about the vit D deficiency thing, and he said that there was no connection between vit d deficiency and PLEVA/PLC. 

I empathize with the family thing Shauna, and have dealt with similar comments.  It has been going on for years now, so they are peetering out, but I expect they'll start up again as my daughter approaches puberty.  Like "Is it gone yet?".  Trust me, when it is gone, I will be practically shouting it out for the world.  Well maybe not, I wouldn't want to jinx a remission. 

California girl on zpack...(sorry, can't remember your name!).  I am encouraged that your zpack seems to be having at least some positive effect, and that your husband even noticed your back looks good.  I think it is harder to tell if it is making a true difference, if I look at it every single day, so I am just trying to look only once in a while.  I know that any results will take a few weeks for me to see, since the PLC lesions last quite alot longer than the PLEVA lesions.  Your experience is very encouraging for me.  How many weeks and how many rounds have you been on zpack?

Take care,

J
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Monday July 28, 2008, 11:14:34 PM
I just wanted to add a PS to that. If you go to the link I left it is stating that vit D is known to be deficient in any disease, not just autoimmune disease, and it is now thought to be a part of any disease process. There is much in the media here concerning supplements etc. warning people not to doctor themselves.
Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Tuesday July 29, 2008, 03:35:43 AM
Hi, it's Linda. I'm on my 2rd round. I take them every three weeks.  They work 6 - 10 days after you complete them. So I take them for 5 days. Stop for 14 (give my body a little breather there) and then start again. So about every 19-21 days. When I take the Z pack they (plevas) pop and peel like crazy and about 5-7 days after I finish I have less bumps, less scars and lots of healing. However, I do notice an inflammation with certain foods...and I do have allergies - but chocolate makes it worse (itchy) and wheat (so I now try to stay after from breads) which is also helping the size of my tush! I'll keep you posted. You ladies do so much research - it's wonderful! Thanks!!
Title: What works for me Re: Pityriasis Lichenoides Chronica
Post by: wisconsinpatient on Tuesday July 29, 2008, 06:16:03 PM
My first neck-to-toes episode was while I was at university: muggy weather, too much sun, stress, and little sleep. Within the first 48 hours of a family trip to Florida, the spots also jump up again. Other than a small, brief flare up from too much gardening, this is how I keep it under control in the summer: thoroughly dry hands and feet, run dehumidifiers and air conditioning, wear long sleeves and a hat. Also helpful: a blood test ($100-$200) for food sensitivities, which is more accurate than a food diary. Avoiding my top two allergens--two of my favorite foods that I ate daily my whole life--frees up the body to deal with the pityriasis lichenoides chronica, which stays mostly away when I have the air on and avoid a lot of daily sunshine. A cheap steroid skin cream prescription (Triamcinolone, less than $10 a season) is stronger than over-the-counter remedies and okay for even my very sensitive skin. Scent free Glycerin soap for $2 at the grocery store, generic body wash, and Magick Botonicals (alerg.com) shampoo work for me, too. But whatever products I use, I need to avoid muggy, sunny conditions, and get 9 hours sleep, or the spots return, splotch, and peel in unbeatiful fashion. Good luck and blessings to all who struggle with this.
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Thursday July 31, 2008, 02:27:35 AM
So you are saying that you think there is definitely a connection with PLEVA and what you eat - allergies, etc.? I have been contemplating getting my son an allergy test or blood work to pinpoint what he may be allergic to. His PLEVA does flare up at times and I would LOVE to know what causes those flare ups. I suppose I could make an app't with an allergist and see what he/she suggests as far as a patch test or just blood work. When he first broke out, I was working with an alternative medicine doc who recommended pretty much taking away everything in his diet - no dairy, wheat, gluten, citrus, etc. I was shopping at the whole foods stores and making everything frome scratch. I still have him eating healthy but have added in more foods for him. The gluten free bread was absolutely horrible. He does break out more when I allow him to drink milk, which he loves. The alternative doc also had him taking a bunch of supplements that I was not comfortable with. So, I stopped all that and took him to a pediatric derm whom we have been working with now for almost 7 months. I love him. I just wish he would be willing to talk to me more about different options or treatment plans. He is pretty stuck on the EES and sunlight. He always says, "no known cause; no known cure." Yeah, thanks doc.

Anyway, just wondering if anyone else out there has ever been tested for allergies or if anyone else has noticed a flare up with foods.

Thanks,

Shauna

Oh, we are leaving for the beach (Ormond beach in FL) for 7 days. I hope the sun and salt water will help the PLEVA "burn itself out" as MJ said happened to her son. Wish us luck.
Title: Re: Pityriasis Lichenoides Chronica
Post by: bhmars on Thursday July 31, 2008, 01:10:18 PM
Hi Everyone I haven't written on the forum for a long time but, I have been reading all the new post.  My PLC looks so much better since the weather is warm and I go out in the sun.  However, I am not free of spots and in fact seem to have 20 or so new spots that started this week.  Hopefully it will not get worse but inevitably, I am sure by November the spots will start popping up everywhere!  I am going for my 6 month appt. to my derm soon so I will be asking about the Z pack and anything new she might be aware of.  Does anyone get a biopsy every 6 months just to make sure it hasn't changed?  I usually have to ask to have one and my derm. usually doesn't seem like it is necessary but i have read that it is important to make sure it hasn't turned into anything else.  So, I insist that I have one and she always does it for me.  Am I being ridiculous for feeling like I want it monitored?  Anyhow, I am so glad to hear that many of the young ones are having less spots since it is summer and who knows, maybe it will continue through the winter and it's on the way to being gone!   
Title: Re: What works for me Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Thursday July 31, 2008, 07:21:18 PM
My first neck-to-toes episode was while I was at university: muggy weather, too much sun, stress, and little sleep. Within the first 48 hours of a family trip to Florida, the spots also jump up again. Other than a small, brief flare up from too much gardening, this is how I keep it under control in the summer: thoroughly dry hands and feet, run dehumidifiers and air conditioning, wear long sleeves and a hat. Also helpful: a blood test ($100-$200) for food sensitivities, which is more accurate than a food diary. Avoiding my top two allergens--two of my favorite foods that I ate daily my whole life--frees up the body to deal with the pityriasis lichenoides chronica, which stays mostly away when I have the air on and avoid a lot of daily sunshine. A cheap steroid skin cream prescription (Triamcinolone, less than $10 a season) is stronger than over-the-counter remedies and okay for even my very sensitive skin. Scent free Glycerin soap for $2 at the grocery store, generic body wash, and Magick Botonicals (alerg.com) shampoo work for me, too. But whatever products I use, I need to avoid muggy, sunny conditions, and get 9 hours sleep, or the spots return, splotch, and peel in unbeatiful fashion. Good luck and blessings to all who struggle with this.

I think avoiding UV is a mistake. The one piece of solid research on this miserable disease is that UV light works. Yes, "muggy sunny conditions" may make the spots appear worse. Mine (PLEVA and PLC) got worse when I was sweating on muggy days, but that included the spots under clothes where no sun penetrated. Try instead a tanning salon, where you can expose all your skin in the privacy of an air-conditioned booth. Modulate your time in the booth so that you have a faint pink glow after exposure, but not a burn (advice which goes for all sun tanning). Most tanning salon personnel can help you figure out how much time to spend in the booth. Everyone tans differently.

The safest strategy is to get a light tan and maintain it, summer and winter. If you don't tan at all, then get that faint pink glow over and over.

I endured PLEVA and then PLC from age 16 to age 35. It comes and goes for no particular reason. Counting spots and ulcers and trying to figure out patterns is scientifically sketchy. Because they appear and disappear spontaneously, you can make a lot of false correlations and drive yourself batty. Doctors will give you all kinds of creams and pills, and the medicine may appear to work because the number of spots goes down. Then the spots get worse, or the PLEVA changes to PLC. Did the medicine stop working? Or was the medicine completely ineffective? I spent thousands of dollars on that junk before a new dermatologist informed me that the ONLY scientifically solid knowledge was that sunlight was an effective treatment, and the way they stumbled on THAT was observing patients who returned from beach vacations with spots in the bathing suit area but not in the tanned area. "Medical science" is truly a contradiction in terms. She saved me thousands of dollars more. Or rather, I spent my money on tanning salons instead of doctors, with excellent results.

I went from "keeping it under control" to "looking good ... and feeling good". And the only time I got any spots was when I neglected my UV regimen.

Sunlight (UV) works. Theories exist, but no one knows why for sure. Vitamin D? It may not be the vitamin D from sunlight, but the production of vitamin D by skin cells. So taking vitamin D supplements doesn't work, but getting vitamin D from UV light does work. Or vitamin D may have nothing to do with it, except to improve your mood. You can come up with your own theory. Theories aside, UV light works. Properly and regularly used, it will eliminate the spots.

About tanning: There is a range of skin types. My skin tans easily and is hard to burn, which actually made it harder to get the right amount of UV. My wife's skin tans very slowly and burns easily. Yet she manages to get a nice tan in the summer without burning. To attack PLEVA/PLC, you have to use common sense and avoid burning while getting that pink glow to happen.

Perhaps Bunnie has some research she can cite, but my dermatologist and the research I've read indicates that proper tanning without burning is pretty safe. As for wrinkles in later life, I am now 55 years old and have only a few laugh lines around the eyes. And I've been getting a nice tan every summer since I was a kid. However, I've only gotten one sunburn in my entire life.

I should add that I have no financial interest in the tanning salon business, and I think young people who over-tan and burn are idiots. But moderate sun exposure over several days or weeks to produce a light tan is probably quite safe. And when you are dealing with a nasty and disfiguring disease like PLEVA/PLC, the small risk of moderate UV exposure is nothing compared to the risk of drug side-effects and/or the disease.

Peace, and get well.

Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Friday August 01, 2008, 12:34:00 AM
Hi ladies
Quote
I endured PLEVA and then PLC from age 16 to age 35. It comes and goes for no particular reason. Counting spots and ulcers and trying to figure out patterns is scientifically sketchy. Because they appear and disappear spontaneously, you can make a lot of false correlations and drive yourself batty. Doctors will give you all kinds of creams and pills, and the medicine may appear to work because the number of spots goes down. Then the spots get worse, or the PLEVA changes to PLC. Did the medicine stop working? Or was the medicine completely ineffective? I spent thousands of dollars on that junk before a new dermatologist informed me that the ONLY scientifically solid knowledge was that sunlight was an effective treatment, and the way they stumbled on THAT was observing patients who returned from beach vacations with spots in the bathing suit area but not in the tanned area. "Medical science" is truly a contradiction in terms. She saved me thousands of dollars more. Or rather, I spent my money on tanning salons instead of doctors, with excellent results.

Quote
It comes and goes for no particular reason.
This is what all autoimmune and atopic diseases do, wax and wane, idiopathically = spontaneously and for no known specific cause.
Quote
Counting spots and ulcers and trying to figure out patterns is scientifically sketchy
I thoroughly agree, (and so does my derm with regard to counting spots in any skin disease, lesion patterns in some diseases are important) This is often done by some derms to see if the disease is reducing whilst on medication, but as you say it is a very unreliable way of evaluating disease activity.
Quote
Doctors will give you all kinds of creams and pills, and the medicine may appear to work because the number of spots goes down. Then the spots get worse, or the PLEVA changes to PLC. Did the medicine stop working? Or was the medicine completely ineffective?
You have explained what the meds do exactly, they control it!  That is the key word. Unfortunately the predisposition in ever having these abnormal immune responses be they autoimmune or atopic, is a part of you and always will be.

It is a certainty that uv light can help many skin conditions, but for some (with other conditions) the sun actually makes some others worse, even exciting the condition as in my own case.

My recent post regarding vitD. http://www.skincell.org/community/index.php/topic,23891.msg298508.html#msg298508

I am just looking through a load of info here on uv light for this condition, and the most recent I have found so far on UV light is this ...

Accepted for publication:
28 December 2007
ABSTRACT
Background/purpose: Narrowband (NB) UVB (NB-UVB) phototherapy has recently demonstrated high levels of efficacy and tolerability in a variety of skin diseases. The purpose of the present study was to assess the efficacy of NB-UVB phototherapy in the management of pityriasis lichenoides (PL).

Methods: The therapeutic response in 31 PL patients (23 pityriasis lichenoides et varioliformis acuta; PLEVA, eight pityriasis lichenoides chronica; PLC) treated with NB-UVB phototherapy between 2000 and 2007 was assessed.

Results: NB-UVB treatment led to a complete response (CR) in 15 out of 23 PLEVA patients (65.2%) with a mean cumulative dose of 23 J/cm2 after a mean number of 43.4 exposures and a partial response (PR) in eight patients (34.8%) with a cumulative dose of 15.6 J/cm2 after a mean number of 32.3 exposures. NB-UVB treatment led to CR in seven out of eight PLC patients (87.5%) with a mean cumulative dose of 18.4 J/cm2 after a mean number of 45.8 exposures and PR in one patient (12.5%) with a cumulative dose of 9.1 J/cm2 after a mean number of 19 exposures. Relapses occurred in four PL patients within a mean time period of 6 months.

Conclusion: NB-UVB therapy is an effective, safe and practical alternative treatment modality for the management of PLEVA and PLC.

I have a couple of others concerning the results in children , but one was 2003 ,and this one was concerning other skin diseases in children and both in fact raised similar concerns.
Quote
We conclude that narrowband UVB phototherapy is a useful and well-tolerated treatment for children with severe or intractable inflammatory skin disease, but concerns remain regarding long-term side-effects.
yet another states it should only be used on children when there has been poor response to other treatments.
bunnie
PS sorry I didn't realise it was so long!
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Friday August 01, 2008, 02:02:49 PM
BLX42, thanks for the helpful information!  My daughter got it when she was 2 and just turned 10.  (just PLC version). I am a little confused about your ages.  You said you got it at 16 til the age of 35.  Did it completely disappear in your mid thirties?  Or, do you still see occassional spots and that is why you lightly tan?  How extensive was it at its worst (age too), and how extensive was it compared to when you were a teenager verses when you were in your mid thirties?  Thanks for the info. 

J
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Friday August 08, 2008, 05:57:43 PM

Results: NB-UVB treatment led to a complete response (CR) in 15 out of 23 PLEVA patients (65.2%) with a mean cumulative dose of 23 J/cm2 after a mean number of 43.4 exposures and a partial response (PR) in eight patients (34.8%) with a cumulative dose of 15.6 J/cm2 after a mean number of 32.3 exposures. NB-UVB treatment led to CR in seven out of eight PLC patients (87.5%) with a mean cumulative dose of 18.4 J/cm2 after a mean number of 45.8 exposures and PR in one patient (12.5%) with a cumulative dose of 9.1 J/cm2 after a mean number of 19 exposures. Relapses occurred in four PL patients within a mean time period of 6 months.

Conclusion: NB-UVB therapy is an effective, safe and practical alternative treatment modality for the management of PLEVA and PLC.


Thanks for the study bunnie.

If it read this right, the PLEVA and PLC patients that went through the whole UV treatment had a complete response (CR) and those who went through the partial treatment had a partial response (PR). Not surprising. That was my experience.

I think the tanning booth route is better and cheaper then the derms who charge a fortune for the same service. As for treating children with UV, remember this is sunlight ... Are we growing mushrooms, or children? Many derms will not approve something for children that may get them sued if any skin cancer develops later in life. And there are a lot of sun-phobic people as a result. But it takes a lot of sun exposure and actual sunburns to significantly raise the risk of skin cancer. And what about the risks of all those drugs? A little common sense says that mild sun exposure resulting in a light tan is a safe and effective alternative to drugs that don't work very well. PLEVA/PLC is a nasty disfiguring disease, and sunlight (UV) is a safe treatment that works about 100% of the time.
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Friday August 08, 2008, 06:18:15 PM
BLX42, thanks for the helpful information!  My daughter got it when she was 2 and just turned 10.  (just PLC version). I am a little confused about your ages.  You said you got it at 16 til the age of 35.  Did it completely disappear in your mid thirties?  Or, do you still see occassional spots and that is why you lightly tan?  How extensive was it at its worst (age too), and how extensive was it compared to when you were a teenager verses when you were in your mid thirties?  Thanks for the info. 

J

Sorry to hear about your daughter. The good news is, if she takes the UV treatment route, she'll have a nice tan throughout her teen years.

To answer your question, I am in my 50's now, and the PLC is completely gone, except for scars. I got PLEVA overnight at age 16, which turned to a bad case of PLC within a few months. I tried all the treatments (including cortisone) with no real result, except it was much better in the summertime. In my late 20s, it was just a few ulcers (about 10 in winter, 2-3 in summer) at a time. When I was 30, a derm I was seeing for something else told me about sunlight and the research. She also told me it was ordinary sunlight I should use, not "narrow band UV" pitched by some derms. So I went to the local tanning salon. It worked completely. Amazingly. From then on, until I was about 36, I only got ulcers when I neglected the tan. About then, they ceased forever. (I had young children after that and didn't get a chance to go to the tanning booth ... but the PLC didn't reappear.)

However, I still try to keep a light tan, because it makes me feel good and I think it's healthy.

Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Saturday August 09, 2008, 02:13:40 AM
J,

I was just wondering how your daughter was doing this summer. I think you live in Florida and was wondering if your daughter's lesions disappear in the summertime with the sun and possible beach swimming. We are actually on vacation in Ormond Beach in Florida right now, and Dylan's skin looks pretty amazing. We have been here 6 days and had him in the ocean everyday. I don't know if it is a combination of the salt water and sun or just the sun, but he looks great. I wish we could live here and have him out all the time. I mean, Georgia is nice and sunny most of the time; but, if we lived by the beach, that would be great.

Anyway, I was just wondering if your daughter's skin cleared in the summer months. I am hoping that come fall/winter, Dylan's spots will have decreased to only a few in places. Last year fall/winter was when he first got PLEVA, and he was completely covered. From what I understand, each outbreak should be less and less as the disease waxes and wanes. I think I could deal with it better if he only has like 10 or so lesions at a time as opposed to 100's. The other woman who has been writing who broke out at 16 - her story sounds promising. The number of lesions went down until she was lesion free.

Anyway, best to all,

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Sunday August 10, 2008, 12:55:22 PM
Hi Shauna,

Glad to hear a week at the beach is helping!  We are on the east coast of Fl, just south of where you were.  (Melbourne).  We put a pool in last fall.  This summer, she has had a fair bit of pool use (3 times a week).  We do sun block because the sun is so intense here.  We go to the beach maybe 2-3 times in the summer.  (I am actually going today, because we have visitors in town!).  (I would probably go more, but don't need to since we have the pool).  Her skin clears up significantly, with a light tan.  (And of course, hypopigmentation).  Probably, if we didn't sun block, I would see a lot more improvement.    She is, however, never PLC free, unfortunately.  But, it goes from hundreds (particularly on upper legs/trunk/upper arms) to dozens.  But they are alot more discrete, smaller, etc... I find after a day at the beach, the salt/sun, her skin actually looks a little more reddened.  Just like after swimming in the pool.  She showers, rinses, moisturizes, and the next morning, her skin looks so much better.  She has never gotten a sunburn (her skin isn't that type, plus with the sunblock).  However, it is the PLC spots themselves that look more reddened.  I have also noticed this phenomenon after a hot or cooler shower.  How is Dylan doing? 

Even in the areas where she doesn't have any conspicuous spots, her skin tends to be dry and flaky, that is why we have to moisturize after showers, etc..  Even her ears and her nostrils and eyes will get slightly flaky, unless I put vaseline.  Hope it helps.  Let me know about Dylan. 

Sincerely,

J
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Monday August 11, 2008, 12:47:48 AM
J,

Thanks for the info. I am sure the pool has been a big help for you all. We eventually would like a pool in our yard; but, with 4 little ones 5 years old and under, we are waiting on that.

Dylan's skin did look worse the first two days at the beach. It was red and irritated. But, after that, the spots started clearing and kept looking better and better. He still has some though. I am afraid he will have more by the end of fall. I had hoped he would be clear by summer's end. But, I guess we will be dealing with it for a while as you have been with your daughter.

Anyway, thanks for all your advice and information. I will keep you informed of Dylan's progress. We see the derm again next week. Dylan's erythro dosage was cut to 6 ml once daily. I think he will probably cut it more afer this next visit. He is trying to taper him off completely to see how his skin does. I am almost tempted to visit with a holistic medicine doc once he is done with the erythro...if the spots start reappearing again. Have you ever tried any of that. (Bunnie, I know. I have already gone down that route, but I just feel like there has to be something else to help his body over this). I will only do that if the lesions start coming again full force and he is off the erythro.

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Monday August 11, 2008, 11:58:45 AM
Hi Shauna,
well you already know my advice on that route, I think you would be making a huge mistake. I am basically thinking of Dylan being the recipient of this kind of treatment. How could you know if anything prescribed by this holistic approach would set off the whole thing again? If it did break out again and you took Dylan, how would you know if Dylan had a hypersensitivity to something prescribed for him, and could cause it to flare really badly?  Do they do blood tests in the same way, I don't know?
Ask your derm about it Shauna, at least hear what they say about it. At least the treatment Dylan is now getting is under tight controls, there is proper data concerning every aspect of the treatment he is receiving. (this doesn't apply to all medical treatments of course, some of us have been the guinea-pigs to help create the data on much rarer diseases.) The same cannot be said for alternative medicine, it is nothing but a series of anecdotal reports and hypothesis.
Regards Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Monday August 11, 2008, 05:47:23 PM
Let me ask a dumb question. If your kid's spots start clearing up at the pool or the beach, why put sunblock on the kids whenever they go? Why put them on antibiotics (erythro) that can cause sun sensitivity? Why bemoan the fact that the spots go from a few dozen in the summer to hundreds in the winter?

If sunlight cures the PLEVA/PLC, why not just treat them with moderate, all-over UV light?

Please believe that I am very sympathetic to the plight of anyone dealing with this disease. I just don't understand.
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Monday August 11, 2008, 09:28:04 PM
Hi Blx.
Quote
Why put them on antibiotics (erythro) that can cause sun sensitivity?
That isn't correct. Not all antibiotics cause sun sensitivity or photosensitivity. Erythromycin does neither as far as I am aware. However the main *Tetracycline* does cause sunsensitivity, and Doxycycline, photosensitivity.
With regard to the UV light. Although it is undeniable that this does help plc and pleva, and indeed many other skin conditions, the worry is in any side effects which may not appear now , but in the long term.
Quote
We conclude that narrowband UVB phototherapy is a useful and well-tolerated treatment for children with severe or intractable inflammatory skin disease, but concerns remain regarding long-term side-effects.
yet another states...
Quote
it should only be used on children when there has been poor response to other treatments.
Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Monday August 11, 2008, 09:42:32 PM
Hi Blx.
Quote
Why put them on antibiotics (erythro) that can cause sun sensitivity?
That isn't correct. Not all antibiotics cause sun sensitivity or photosensitivity. Erythromycin does neither as far as I am aware. However the main *Tetracycline* does cause sunsensitivity, and Doxycycline, photosensitivity.
With regard to the UV light. Although it is undeniable that this does help plc and pleva, and indeed many other skin conditions, the worry is in any side effects which may not appear now , but in the long term.
Quote
We conclude that narrowband UVB phototherapy is a useful and well-tolerated treatment for children with severe or intractable inflammatory skin disease, but concerns remain regarding long-term side-effects.
yet another states...
Quote
it should only be used on children when there has been poor response to other treatments.
Bunnie

Emycin can cause photosensitivity. Here's a link: (www.drugs.com/ppa/erythromycin-ethylsuccinate-sulfisoxazole.html)

As for use in children, what is the reference you are quoting, and does it say why? It would seem that the other treatments I've read about here have significant side-effects, whereas a few minutes of sunlight on the skin each day would seem to be pretty safe. So I would be interested in knowing the reasoning behind this statement. As I understand it, medicine is always a balancing of benefits and side effects.


Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Tuesday August 12, 2008, 12:47:13 AM
Hi here are the links, in none of them is Erythromycin associated with sun sensitivity. It mentions it in the other two types of tetracyclines, but not this one.  The link you gave does not refer to this erythromycin being used here for plc/pleva. Erythromycin ethylsuccinate,
Quote
this compound is an ester of erythromycin base and succinic acid.
Sulfisoxazole acetyl brand name Gantrisin
Quote
is a children's medication prescribed for the treatment of severe, repeated, or long-lasting urinary tract infections
, among other infections.
http://medical.webends.com/kw/Erythromycin%20Ethylsuccinate
Read under Systemic Treatment Options concerning the different tetracyclines
http://www.healthology.com/main/article_print.aspx?content_id=3
and.....scroll down to antibiotics on first link
http://www.emedicine.com/derm/topic334.htm
http://en.wikipedia.org/wiki/Erythromycin
http://dermnetnz.org/treatments/erythromycin.html
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a682381.html
With regard to UV light....
Quote
Treatment with ultraviolet light usually ties patients to twice- or thrice-weekly visits to hospitals. Mild degrees of skin redness and burning are also common short-term adverse effects. Occasionally
more severe burning may occur. There is no direct information on the long-term risk of skin cancer in
atopic eczema patients undergoing ultraviolet light treatment. Although data on cohorts of psoriasis
patients undergoing PUVA suggest that cancer risk only increases after around 250 treatment sessions,
extrapolating from these studies to another inflammatory disease with a generally younger patient population raises some concerns. This is particularly so for melanoma skin cancer where it is thought that most risk is acquired from ultraviolet light in the first 20 years of life.
http://aappolicy.aappublications.org/cgi/content/full/pediatrics;104/2/328
The two quotes I left and posted previously on another post on here concerning this subject, were from the British Journal s of Dermatology I think if I remember rightly, which for the present I cannot find, and as it is now 1:40 in the morning here in the UK, you will I'm sure (after looking for them for over an hour) understand if I leave off to go to bed! However as I have said, most of the literature on this, expresses concern in the use of children under 12 years old for the side effects in the long term. I will search more tomorrow for those two articles , but I do assure you that they are direct quotes.
bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Tuesday August 12, 2008, 06:26:35 AM
Hi here are the links, in none of them is Erythromycin associated with sun sensitivity. It mentions it in the other two types of tetracyclines, but not this one.  The link you gave does not refer to this erythromycin being used here for plc/pleva. Erythromycin ethylsuccinate,
Quote
this compound is an ester of erythromycin base and succinic acid.
Sulfisoxazole acetyl brand name Gantrisin
Quote
is a children's medication prescribed for the treatment of severe, repeated, or long-lasting urinary tract infections
, among other infections.
http://medical.webends.com/kw/Erythromycin%20Ethylsuccinate
Read under Systemic Treatment Options concerning the different tetracyclines
http://www.healthology.com/main/article_print.aspx?content_id=3
and.....scroll down to antibiotics on first link
http://www.emedicine.com/derm/topic334.htm
http://en.wikipedia.org/wiki/Erythromycin
http://dermnetnz.org/treatments/erythromycin.html
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a682381.html
With regard to UV light....
Quote
Treatment with ultraviolet light usually ties patients to twice- or thrice-weekly visits to hospitals. Mild degrees of skin redness and burning are also common short-term adverse effects. Occasionally
more severe burning may occur. There is no direct information on the long-term risk of skin cancer in
atopic eczema patients undergoing ultraviolet light treatment. Although data on cohorts of psoriasis
patients undergoing PUVA suggest that cancer risk only increases after around 250 treatment sessions,
extrapolating from these studies to another inflammatory disease with a generally younger patient population raises some concerns. This is particularly so for melanoma skin cancer where it is thought that most risk is acquired from ultraviolet light in the first 20 years of life.
http://aappolicy.aappublications.org/cgi/content/full/pediatrics;104/2/328
The two quotes I left and posted previously on another post on here concerning this subject, were from the British Journal s of Dermatology I think if I remember rightly, which for the present I cannot find, and as it is now 1:40 in the morning here in the UK, you will I'm sure (after looking for them for over an hour) understand if I leave off to go to bed! However as I have said, most of the literature on this, expresses concern in the use of children under 12 years old for the side effects in the long term. I will search more tomorrow for those two articles , but I do assure you that they are direct quotes.
bunnie

I think we're getting a little far afield. Yes, you're right. I cited a combination drug by mistake (erythromycin ethylsuccinate/sulfisoxazole) which causes photosensitivity. My bad. E-mycins cause me to break out in hives, so I'm biased. However, when looking it up on Medscape, I came upon the following statement that goes to the heart of my point:

"As with most other antibiotics, erythromycin and aztreonam are associated with a risk for developing Clostridium difficile–associated diarrhea that can range in severity from mild diarrhea to fatal colitis." -- www.medscape.com/viewarticle/574465

Z-pak (Zithromax) can cause chest pain, uneven heartbeats, jaundice, colitis, and a host of less serious side-effects (www.drugs.com/mtm/azithromycin.html).

Steroids can cause ... do we really need to go into that one?

Now my point here is not to scare the heck out of everyone. My point is simply this: There is no free lunch. All these treatments have side effects, and none of them are risk-free.

The only reason to take a risk with any medical treatment is to obtain a benefit. The drug treatments for PLEVA/PLC do not work very well. Erythromycin ethylsuccinate, for example, has a 66% success rate for partial to full response, and when discontinued, generally results in a relapse. (http://linkinghub.elsevier.com/retrieve/pii/S0190962206022663)

Sunlight works very well. And it doesn't take much sunlight. A moderate and regular treatment in a tanning booth, enough to produce a healthy glow, is all it takes. And that is at least as safe as the drug treatments that don't work very well. Also cheap, something that matters here in the U.S., where we have to pay for medical treatment.

Apparently the researchers you quote didn't like the idea of "twice- or thrice-weekly visits to hospitals" for UV treatment, or the fact that their UV treatments caused some sunburns. Shame on them for burning their patients. Here in the U.S. the derms are over-charging them too. I went through the expensive, infrequent, dermatologist-recommended "narrow-band UV" treatments too, which left me no better.

Bunnie, you have Linear IGA, which requires complicated drug therapy using agents with serious side effects. I deeply sympathize. But I ask you this: If you could trade all those drugs for a few minutes a day inside a tanning booth ... in exchange for a complete remission ... would you do it? Would you have your child do it?

PLEVA/PLC doesn't really have a good drug therapy regime.  There have been no randomized controlled trials (!) for the various antibiotic therapies (www.emedicine.com/derm/topic334.htm) the derms push. Sunlight is a front line therapy with a clinically proven record of success.


Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Tuesday August 12, 2008, 01:19:08 PM
BLX42,

What is your skin condition?

As for my child - I have followed dr's orders as far as sunlight goes. I have had him in the sunlight whether at the pool or the beach almost everyday this entire summer. Yet, he is still not lesion free. His spots look better thanks to the sun but are not nonexistent. And, yes, I use sunscreen on him because the derm told me if he were to get burned, the PLC/PLEVA would look terrible. Burns are not good for anyone, especially anyone with a chronic skin condition. Plus, I do not want to increase his risk of skin cancer in later years.

As for the erythro - from what I have learned from the derm and read on my own, erythro has been proven a very safe and fairly effective treatment for PLEVA. It is not a cure; but, it keeps the lesions at bay. It helps cut down on inflammation. As for the diarreah (sp?), if my child were to display symptoms of stomach problems, the erythro would be stopped. My derm believes the erythro does help the PLEVA burn itself out. I am not sure on that one, but he seems to know a lot about the disease and has treated many cases of it. He says the disease can be stubborn and hang around for a while but that through these treatments - sunlight and erythro, it should go away eventually.

Believe me, this is my child, my 3 year old baby dealing with a potentially chronic skin condition. I am doing everything in my power to help his body rid itself of this disease. For now, all I can do is trust the doctor trained in dealing with skin conditions. If all I had to do was sit him in the sun everyday, I would do it. Unfortunately, it is not that easy. J, whose daughter has been dealing with this for years, lives in Florida. She has a pool in her backyard, and her daughter still has the skin condition. SHe has never been lesion free. So, it is not as simple as you may think to treat.

As for the tanning bed, he is 3 years old. He is not going to lie in a tanning bed long enough for treatment. And the light boxes the offer in derm offices are not recommended for him because of his age and risk factors i.e. burns, eye damage if he removes the goggles, skin cancer, etc.

Shauna

Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Tuesday August 12, 2008, 01:25:08 PM
Hi Blx,
Please note to anyone reading, that text underlined and made bold is to indicate that for which these tools are intended ie: to draw attention to, and must not be interperated as shouting or aggression.
I have IgA mediated Epidermolysis Bullosa Aquisita, and although the appearance of the disease is the same as linear iga and acts in the same way, it is a life threatening form because it also targets the collagen region as well as (in me) the base region of the epidermis, and therefore causes the epidermis to shift away from the dermis.
Normally EBA is IgG mediated, which therefore makes my condition very rare indeed. In 1993 there were only 2 recorded cases in the world, my understanding is that now there are about 24, but don't quote me.

With regard to your first link. I draw attention to this because you see this is a huge problem when reading articles. People read stuff and misinterperate what they are reading. Medical articles are usually specific to what they are referring to. It does not say what you quoted.ie:...
Quote
"As with most other antibiotics, erythromycin and aztreonam are associated with a risk for developing Clostridium difficile–associated diarrhea that can range in severity from mild diarrhea to fatal colitis."
It does say , and I make the quotes here, please note in bold that which I wish to draw your attention to ...
Quote
Certain Antibiotics Linked to Risk for Posttherapy Clostridium difficile–Associated Diarrhea
On January 5 and 22, the FDA approved safety labeling revisions for a macrolide antimicrobial and a monolactam antibiotic, respectively, to warn of the risk for C difficile–associated diarrhea (CDAD).

Updated product monographs include those for erythromycin particles in tablets (PCE Dispertabs, Abbott Laboratories, Inc); erythromycin ethylsuccinate for oral suspension (EryPed, Abbott); erythromycin succinate (These are NOT the same Erythromycin) oral suspension, granules for oral suspension, and tablets (EES, Abbott); and aztreonam injection for intravenous use (Azactam, Bristol-Myers Squibb).
Use of these agents can alter the colon's normal flora, leading to overgrowth of C difficile and subsequent release of toxins A and B that contribute to the development of CDAD. Nearly all antibiotics have been implicated in CDAD, which may range in severity from mild diarrhea to fatal colitis.
Please note regarding that last high-lighted sentence; that while this is indeed true, that dose relation must come into this evaluation, and antibiotics given to children are very closely monitored, and erythromycin is regarded overall, the safest.
Quote
Erythromycin and aztreonam are indicated for the treatment of infections caused by susceptible strains of designated microorganisms. Erythromycin has an antimicrobial spectrum similar to that of penicillin and is often used to treat respiratory tract infections, sexually transmitted diseases, and acne. Aztreonam has strong activity against susceptible gram-negative bacteria, including Pseudomonas aeruginosa.
Not erythromycin.
I do see your point however, and I agree with these conditions one is between a rock and a hard place with regard to treatment. None are a cure, control is the keyword. As to what I personally would do regarding if it were my child, I would seek out the best derm there is, the one most highly renowned, and get his opinion on both forms of treatment. Erythromycin has excellent antinflammatory effects and as Plc and pleva are inflammatory conditions, then I suspect that is the reason for using it, it is also regarded the most safe.
Quote
If you could trade all those drugs for a few minutes a day inside a tanning booth ... in exchange for a complete remission .
Well of course this does not apply to my situation as sunlight exascerbates my condition, and I never therefore walk about in the sun. As I have said on here before I feel physically sick on hot days, and itch unbearably.
With regard to the UV light therapy and my child, there is no way I would agree to it UNLESS under strict medically controlled circumstances, and if it was highly recommended to do so. The risk is in developing melanoma later in life, a risk which can be reduced by being under the supervision of the dermatology dept. There is absolutely no way, I would do this off my own bat, especially concerning a child.
Here are a couple of links concerning positive outcomes in the use of controlled Narrowband UVB (311 nm, TL01) phototherapy for pityriasis lichenoides. Please tell me if you cannot view the articles. I will then have to post it.
http://www3.interscience.wiley.com/journal/117983957/abstract
http://www3.interscience.wiley.com/journal/120089610/abstract
warnings and concerns......
Here are a couple that I took the quotes from in my previous post and couldn't find yesterday, please note the conclusions at the end ...please let me know if you can't view them.
Quote
We conclude that narrowband UVB phototherapy is a useful and well-tolerated treatment for children with severe or intractable inflammatory skin disease, but concerns remain regarding long-term side-effects.
http://www3.interscience.wiley.com/journal/118610981/abstract
http://www3.interscience.wiley.com/journal/119217001/abstract
http://www3.interscience.wiley.com/journal/118520891/abstract
This one concerns the rates of adverse effects on the use of narrow-band UVB and PUVA.
http://www3.interscience.wiley.com/journal/117988886/abstract
If you have been taking your child to a sunning booth in order to treat this disease, off your own bat, and with no medical supervision,  then you are putting your child at risk.
Again, regarding misinterperation of the reading from a medical point of view....
Quote
No randomized controlled trials of the use of medications have been performed in Mucha-Habermann disease. Since the disease tends towards self-resolution, evaluation of treatments without adequate controls cannot result in useful recommendations. A number of open trials have reported success with light therapy and oral medications.

Clearly there are no trials specific to plc or pleva, but there are open trials. Like most everyone else regarding their specific condition, they fail to realise that research encompasses all the variations of the pathogenisis of the types of skin conditions. For eg. Plc and pleva come under the heading of Inflammatory Papulosquamous Disorders, which include.....
Psoriasis (Psoriatic arthritis) - Parapsoriasis (Pityriasis lichenoides et varioliformis acuta, Pityriasis lichenoides chronica, Lymphomatoid papulosis) - Pityriasis rosea - Lichen planus - Pityriasis rubra pilaris - Lichen nitidus.
Then there are a whole list of various Bullous (blistering) conditions and so on.
You can note throughout this forum for example that many of these skin conditions are treated with the same medications, that is because the pathogenisis of the disease may be similar and follow a similar pathway.
I understand Plc and pleva are self-limiting in that it will eventually disappear, and like most other abnormal immune responses can remit spontaneously, but for a percentage the condition can carry on into adulthood, flaring and subsiding along the way.
http://www.beautyassist.com/skin-disorders/Pityriasis%20Lichenoides%20Chronica.html
Quote
PLEVA synonyms (other names, same meaning)=
Pityriasis Lichenoides et Varioliformis Acuta (Mucha-Habermann), Mucha Habermann Disease, Acute Guttate Parapsoriasis.
There may be just a few episodes and complete resolution within 6-8 week, but lesions may also recur over many months or even years.

Quote
The natural tendency of the disease is to remit spontaneously, but some cases may wax and wane over years. Disease duration may be longer in adults.
Quote
PLEVA lesions may evolve into lesions of PLC
http://www.emedicine.com/derm/topic334.htm
http://www.bad.org.uk/patients/leaflets/lichenoides.asp
I yet again apologise for the long post.
Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Tuesday August 12, 2008, 01:27:21 PM
Well said Shauna, my point exactly!
Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Tuesday August 12, 2008, 01:31:03 PM
Thanks Bunnie! Although your points are backed by research; mine are simply backed by a mom loving her baby and trying to do what is right for him.

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Tuesday August 12, 2008, 01:51:56 PM
Quote
mine are simply backed by a mom loving her baby and trying to do what is right for him.
And you are Shauna.  :hug: I know you have gone to some trouble to find the right person to handle Dylans treatment, and that is not only the right thing to do, it is the best thing to do, because whatever treatment is being given for your Dylan, it is based on scientific knowledge, and not some out-dated form of anecdotal treatment, based on a hypothesis, that has no scientific data whatsoever. Nor are you treating Dylan with your own ideas as to treatment, but under supervised controls by people who have spent years studying, and who have attained a rigorous level of excellence in order to receive their credentials in this specific field of medicine.
fondly bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Tuesday August 12, 2008, 04:33:47 PM
Thanks Bunnie! Although your points are backed by research; mine are simply backed by a mom loving her baby and trying to do what is right for him.

Shauna

All what points? What research? Bunnie is making the same points I did, with a lot of links, scientific terminology, and digressions.

As Bishop Berkeley said, "We have first raised the dust, and then we complain that we cannot see."

Regarding research, there are "no randomized controlled trials of the use of medications" for PLEVA/PLC. Bunnie argues that open trials or experience from other skin diseases with similar symptoms should count, but in fact, they don't, not as research. If they did, homeopathic medicine would be respectable.

By the way, if you have read my recent posts, you will see that I did not take the tanning booth route "off my own bat" ... but at the suggestion of a dermatologist. I had previously gone to the "best guy in the city" ... in two different cities ... as well as other guys. I had been given e-mycin and tetracycline for years, to the point that I developed severe sensitivities to them. I had been given the expensive, too-infrequent UVB treatments by "the best guy in the city" and suffered burns as a result. I had been given internal steroids by a lazy derm who didn't bother to read the literature to see that they were ineffective. I had been experimented on by another dermatologist with various expensive creams.

Finally, after 15 years ... after giving up ... my wife's dermatologist saw a lesion and told me that UV light was the only effective treatment. I asked her if she could schedule me for some UV treatments, and she said, "Since it is ordinary sunlight that cures it, you can just go to a tanning salon."

That day marked the end of my PLC, which was the stubborn, ulcerative kind.

Ultimately, Bunnie is just stating an opinion ... that she wouldn't do anything to treat PLEVA/PLC unless a doctor recommended it. Which is fine. That's what I did. Get a second opinion. Get a third.
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Tuesday August 12, 2008, 08:23:47 PM
hi blx,
Quote
All what points? What research? Bunnie is making the same points I did, with a lot of links, scientific terminology, and digressions.
What else then, are those links but fact based reference to research? That is specifically what they are!
Quote
Bunnie is making the same points I did,
Indeed I am not, but simply, literally, pointing out and high lighting to you where you have misread the data, from the quotes you left.
Quote
Regarding research, there are "no randomized controlled trials of the use of medications" for PLEVA/PLC. Bunnie argues that open trials or experience from other skin diseases with similar symptoms should count, but in fact, they don't, not as research.
You are so wrong with that statement BLX , with all sincere due respect. I am not arguing about it , nor am I saying they should count, but the fact  they do! Simply again showing that it is your misunderstanding as to how clinical trials and research are conducted, and I further gave explanation as to why that is the case.
I explain again what you are failing to understand......You are seeing plc and pleva as specific, when in fact they come under the heading of Inflammatory Papulosquamous Disorders, therefore the pathogenisis is similar; add to that, the genetic predisposition then, it is common sense that research encompasses the combination of the genetics and the pathogenisis of this type of disease. The disease you have manifesting is simply the pathogenic result of the abnormal immune response to this hypersensitivity in you. It can and will in fact be a different hypersensitivity to something in each one of you that triggered theses genes into play.
Where are the digressions in my post? The points I have made all are related in some way.
Quote
Ultimately, Bunnie is just stating an opinion ... that she wouldn't do anything to treat PLEVA/PLC unless a doctor recommended it. Which is fine. That's what I did. Get a second opinion. Get a third.
I do not pass opinions ever, unless specifically asked which you did! I give fact based reference for consideration, not my opinions, but that of researched subjects, by qualified experts in the field of medicine. When asked for my opinion I do not take it lightly but offer an educated opinion on the subject, in which I am profoundly interested, I also clearly state "this is my opinion" if giving one without being asked.
Quote
that she wouldn't do anything to treat PLEVA/PLC unless a doctor recommended it
Regarding autoimmune diseases and Atopic diseases indeed I would not, especially when very young children are involved.
Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Tuesday August 12, 2008, 10:06:59 PM
hi blx,
Quote
All what points? What research? Bunnie is making the same points I did, with a lot of links, scientific terminology, and digressions.
What else then, are those links but fact based reference to research? That is specifically what they are!
Quote
Bunnie is making the same points I did,
Indeed I am not, but simply, literally, pointing out and high lighting to you where you have misread the data,
Quote
Regarding research, there are "no randomized controlled trials of the use of medications" for PLEVA/PLC. Bunnie argues that open trials or experience from other skin diseases with similar symptoms should count, but in fact, they don't, not as research.
You are so wrong with that statement BLX , with all sincere due respect. I am not arguing about it , nor am I saying they should count, but the fact  they do! Simply again showing that it is your misunderstanding as to how clinical trials and research are conducted, and I further gave explanation as to why that is the case.
I explain again what you are failing to understand......You are seeing plc and pleva as specific, when in fact they come under the heading of Inflammatory Papulosquamous Disorders, therefore the pathogenisis is similar; add to that, the genetic predisposition then, it is common sense that research encompasses the combination of the genetics and the pathogenisis of this type of disease. The disease you have manifesting is simply the pathogenic result of the abnormal immune response to this hypersensitivity in you. It can and will in fact be a different hypersensitivity to something in each one of you that triggered theses genes into play.
Where are the digressions in my post? The points I have made all are related in some way.


Let me give you an example. I said "If you could trade all those drugs for a few minutes a day inside a tanning booth ... in exchange for a complete remission" ... And then you said "Well of course this does not apply to my situation as sunlight exascerbates my condition" That is a digression. I know you have a different condition from PLEVA/PLC. I began the sentence with "if". Also, it is not a very logical digression, since you later make the argument that our disorders are very similar.

Please tell me specifically where I have misread the research you cite. I read it once, and then I went back and read it again. In every case, UV worked far better than the drug regimens.

Also, there is a huge difference between randomized controlled studies and open studies. Please don't tell me about my "misunderstanding as to how clinical trials and research are conducted." I have a scientific education and I know very well how they are conducted. Sometimes sloppily. Often haphazardly. Always occasionally ... when it comes to rare diseases like PLEVA/PLC.

Why did you become so upset when I asked why parents would send their children outdoors, in an uncontrolled environment, covered in sunscreen and partially by bathing suits, rather than give them controlled all-over UV treatments? It is a legitimate question.

Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Tuesday August 12, 2008, 10:30:41 PM
Whoa everyone. I think Dylan's mom is, of course, feeling frustrated and overwhelmed and angry. I have been through all of that myself over the last 6 years. The truth is that having anything impact your health and wellness sucks! No one wants bumps, or blisters, or itching, etc. I hold a nursing license and ask my derm new questions all the time. The truth of the matter is that they DO NOT KNOW. They simply do not. My internist said this inflammatory stuff is still so undisovered. So it's like we are all on Mars and they need to find their way to us. I say try what you feel is safe and comfortable. What works for one person does not work for another. We know that to be fact. The tanning booth did nothing for me, the doc's light is helping. Tetracycline did nothing, the Z pack seems to be working. I too was freaked about the complications...I am NOT a drug person - do not even like to take Tylenol! What helps the most is no stress and floating in my pool in the sun. But it's summer and that will be gone soon. I will be starting a new Z pack and one of the warnings for this and the Emycin is sun sensitivity...not as much as the tetracyclines. I have not had that reaction but that does not mean someone else will not. So the drug companies have to list it to voer their ass. What is sad is there is no magic bullet. There is no known cure and there are days that I cry and other days that I think this could be something a whole lot worse. I have a friend just diagnosed with diabetes, my daughter's friend died of leukemia when she was 13. I have several friends with breast cancer, several died from colon cancer and one had a near fatal heart attack. Life is short, enjoy each other, share the knowledge and follow your gut keeping in mind there is no magic cure.
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Tuesday August 12, 2008, 11:11:00 PM
OK , some crossed wires here I think,
Quote
Let me give you an example. I said "If you could trade all those drugs for a few minutes a day inside a tanning booth ... in exchange for a complete remission" ... And then you said "Well of course this does not apply to my situation as sunlight exascerbates my condition" That is a digression. I know you have a different condition from PLEVA/PLC. I began the sentence with "if". Also, it is not a very logical digression, since you later make the argument that our disorders are very similar
No I do not, read it again, you are misreading my posts now!   Not ours  ie mine and yours , but Inflammatory Papulosquamous Disorders, which include.....
Psoriasis (Psoriatic arthritis) - Parapsoriasis (Pityriasis lichenoides et varioliformis acuta, Pityriasis lichenoides chronica, Lymphomatoid papulosis) - Pityriasis rosea - Lichen planus - Pityriasis rubra pilaris - Lichen nitidus. I gave another example of how these disorders are grouped together because of their similar pathogenisis, ie Bullous disorders.( not to plc but in bullous disorders )

Quote
Please tell me specifically where I have misread the research you cite. I read it once, and then I went back and read it again. In every case, UV worked far better than the drug regimens.

I was not referring to the articles that I cited at all, but to the quotes that you cited to make your case. Your interperatation of those quotes that you made was incorrect, and I simply reposted them and high lighted the areas that you had misinterperated.
Quote
I have a scientific education and I know very well how they are conducted.
If that is the case then you would know for sure that research in disease that follow a similar pathogenisis, come under a main heading, as I have pointed out above , and add to that if they are of a genetic predisposition then that groups them even more specifically. For an eg  If you have an autoimmune condition, (there are over 80 diseases which are autoimmune conditions all manifesting differently, affecting skin, blood organs etc.) but the underlying cause is the same, ie mutated genes predisposing you to having an abnormal immune response. Find a drug capable of altering the transcription of the specific genes involved, and the resulting pathogenisis will be resolved . Do you get my point in giving you these examples?
Quote
Sometimes sloppily. Often haphazardly. Always occasionally .
Sorry I simply do not agree at all with that statement.

Quote
Why did you become so upset when I asked why parents would send their children outdoors, in an uncontrolled environment, covered in sunscreen and partially by bathing suits, rather than give them controlled all-over UV treatments? It is a legitimate question.

It was not me, shauna answered that,  her son is very young, and where children are concerned one should follow the advice of a qualified person.

Quote
If you could trade all those drugs for a few minutes a day inside a tanning booth ... in exchange for a complete remission"

I did  answer that for myself stating the case as is, however as an adult in your position then probably indeed I would try it, but we were not talking about an adult but children, at least I was. There is good evidence that it helps, but even then, I would not just just take it upon myself but have it under the strict controls of a medical professional at the hospital, where it is carried out here. Here in the UK our Health care is free. Our mind-set (for want of a better word) is  totally different in comparison to other countries on health care.
Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Wednesday August 13, 2008, 01:42:02 AM
I probably shouldn't get involved, but I have to defend BLX42, because, as a mother dealing with this for eight years and having talked with specialists, I see his point.  My derm said that the only thing that works best, consistently, is ambient sunlight.  He mentioned, perhaps, down the road, if my daughter as a young adult, is still dealing with this, she might consider the "light box" treatment.  Sometimes, erythro etc.. works, most of the time, not. 

With all due respect, Bunnie, your information is interesting, and informative, but frankly, you lose me most of the time, because you sound like a doctor.    Are you a doctor by the way? 

BLX42, as far as the sunblock question, when we lived up in the northeast, in the summer, I practically never put sunblock on my daughter, or if I did, it was very sparing (tops of shoulders, etc..).  We moved to Florida, and the UV index here is in excess of 10.  I really do not want her to burn.  Her upper legs (above the knees) tend to be more severly affected by PLC, so I tend not to really sunblock this area (unless we're going to the beach).  I am not sure where in the US you live, but here, even with SPF 30, one still gets some colour.  These are my reasons for using sunblock on her, although I don't slather it on too thickly.  My son, on the other hand, is fairer, has no skin issues, and I am more careful to cover him (he still gets colour though!). 

J

I can see my daughter going your route, if ever this thing does  not clear up on its own.  I will council her to wait til she's an older teen etc..  It sounds like you probably would have cleared up eventually, even if you didn't tan.  (20 years!).  I support and agree with your approach.  I have tried a round of erythro on my daughter.  No avail.  I have tried zpack on her (no avail yet).  A specialist in Boston Children's told me if erythro etc..  doesn't work, the best treatment is to "wait it out, moisturize and get some ambient sun".  Sounds like what your doc said. 

Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Wednesday August 13, 2008, 03:04:55 AM
Yikes! I did not realize everyone was getting so upset.

J, thank you for your input. You and your daughter have been dealing with this condition for a while and always have valuable advice to offer. Thanks. You are right, as far as what I have seen for Dylan, sunlight is the best treatment.

BLX,

Sorry. I never meant to come across angry or upset. Your earlier comment said something about just getting the kid into the sun, leaving off sunscreen, and staying away from drugs. All that sounds great. But, when you are a mother of a 3 year old with a rare chronic skin condition knowing nothing about it except what the derm says, you do what he says. Dylan was covered from the neck down when he first broke out. I did not find out what he had until 1 month later. That was terrifying. The first derm we say thought he had Langerhan's Cell Histiocytosis. I thought he was dying. It was scary. When we found out what he really had, I went to another derm who knew what he was talking about. He said he had treated PLEVA before and erythro worked along with plenty of sunlight. So, that is what we are doing. I agree that it is not my first choice to have my son on antibiotics indefinitely. But, I wanted to give it a try before knocking it. As for the tanning bed, I just am not sure if that is ok for a 3 year old right now. I never sunscreen him unless at the beach or pool. Just playing outside, he goes suncreen free.

Anyway, I really appreciate all the advice. It does sound like pure sunlight is the best bet with this condition. I hope Dylan can get off the erythro soon. I will let you all know how the app't goes next week.

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Wednesday August 13, 2008, 04:06:18 AM
Shauna, J, lindadiane, and anyone else dealing with this crappy disease ... My point in posting was to provide some experience from 20 years of PLEVA/PLC, because I wish someone had cared enough to do so when I was 16.

lindadiane, thanks for stating the obvious. The doctors DO NOT KNOW much of anything about this disease. The drugs they prescribe are untested for PLEVA/PLC. It is possible that they work, but just as possible they are just causing placebo effects.

J, you seem to be doing what the doctor said ... plenty of sun. I recommended the light box or sunbed approach because most of my worst blisters and ulcers in the summer were under my bathing suit. There is another reason. You can control the exposure for safety reasons. (BTW, I have no evidence that my 20-year bout wouldn't have cleared up without the tanning salon. There was a six year period there when I got UV every other day.)

Shauna, you have a tough set of problems with Dylan. What I said to J about under the bathing suit and controlled exposure goes for him too. Depending on the fairness of his skin, it may take only five minutes or so of controlled exposure, and a tanning bed would not present any burn hazards to a child, while allowing your supervision. I WOULD put sunscreen on him when he is "just playing outside." That's where some of the most dangerous sun exposure occurs.

bunnie, A lot of people react negatively to mention of tanning salons and tanning beds because they are encouraging dangerous and unnecessary sun exposure among young adults. They are. But they are a godsend to PLEVA/PLC sufferers in the USA. We have no free health care here like you have in the U.K. UV treatments in a doctor's office cost thousands of dollars a year ... and that's if you have health insurance.

My larger point: All these treatments have risks and side-effects. Patients and parents need to consider these risks against benefits. If antibiotics do not work (and there is only ambiguous evidence that they do), then there is no justification for running the risks they present. Why take a risk for little or no benefit? Sunlight used in moderation presents some well-known risks, but the few good studies that exist show its benefits to be superior to other treatments.
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Wednesday August 13, 2008, 04:21:49 AM
I can see my daughter going your route, if ever this thing does  not clear up on its own.  I will council her to wait til she's an older teen etc..  It sounds like you probably would have cleared up eventually, even if you didn't tan.  (20 years!).  I support and agree with your approach.  I have tried a round of erythro on my daughter.  No avail.  I have tried zpack on her (no avail yet).  A specialist in Boston Children's told me if erythro etc..  doesn't work, the best treatment is to "wait it out, moisturize and get some ambient sun".  Sounds like what your doc said. 

Actually, my (last) derm said to get my butt to a tanning salon. There is a problem with the "wait it out" approach. This disease can rapidly turn into an ulcerous mess that leaves deep permanent scars like a bad case of chickenpox. This can happen suddenly, within a single week. I speak from experience. Also, the emotional trauma of a little girl putting up with PLEVA/PLC in middle school or high school ... I don't like to think about it.
Title: Re: Pityriasis Lichenoides Chronica
Post by: Nick on Wednesday August 13, 2008, 08:10:10 AM
Please note that this thread appears to be taking an aggressive turn, whether it is intended or not.

The thread is now being monitored by the Mod Team and may be locked if this continues.
Title: Re: Pityriasis Lichenoides Chronica
Post by: bunnie on Wednesday August 13, 2008, 10:25:23 AM
 
Quote
Are you a doctor by the way?
No
I know that light therapy is the best for plc and pleva, and I gave links to reports on that, under "concerning positive outcomes" I then gave links to reports which give concerns over using it on children under the age of 12. The rest is self explanatory.
Bunnie
Title: Re: Pityriasis Lichenoides Chronica
Post by: galpal on Wednesday August 13, 2008, 02:39:06 PM
Wow!  Haven't checked in for a bit but let's relax!!  I've always enjoyed the positive info on this website and I rely on it to boost MY spirits when my daughter is having a bad episode (her spirits are fine!).  I love Bunnie's research (very informative) but I do agree with BLX.

1.  Sunlight is the ONLY thing that worked for us.  As fair, Irish type (lots of freckles), I'm very careful to only let her have a light, light tan (if you can call it that) per her derm from Children's Hospital in Boston.  We definitely will try the tanning booths when SHE becomes self-conscious during her winter episodes.  That is okayed by her doc, also.  When I mentioned phototherapy, he shrugged and said to go to the local tanning booth.

2.  I've not used the antibiotics in over 14 months because they just didn't work but I would be willing to give it another go if this winter is bad.   Sounds like some have had success with a Zpack regimen.   

3.  My daughter's PLEVA has turned into dime sized ulcers.  They have left large chicken pox like scars.  Three on the face.  Many on her body.  She'll be in the tanning both faster than a wink next time I see it go that direction.  J is right, it happens very quickly. 

4.  Good luck everyone.  Let's keep the thread going......



 
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Wednesday August 13, 2008, 04:12:44 PM
Hi again,

Just wondering if anyone has used the tanning booth with a young child - and in young, I mean 3 years old or younger. When I approached the subject of the light box with our derm, he looked at me as if I were crazy. He said he has never recommended it to any of his younger patients. But, he gave me a referral to the laser center anyway just to check it out. I set up an app't there with Dylan, and of course, only one doc had ever seen PLEVA before, and it was in his residency like 20 or so years ago. He did not recommend it because of the risk of harm to little ones; like, if he took the goggles off, his eyes could be damaged; if he moved around, he could get burned, etc. But, I know the light box is different than a tanning bed. I wonder if that would be safer and considered an alternative. Any ideas? I have only been in a tanning bed once in my life and swore to never go back. I just did not like it. But, I do remember having to wear protective eye coverings. That is my main concern with Dylan. He is too little to understand to keep those on and stay still.

Oh, and as for everyone who has tried or is trying a type of antibiotic like erythro, tetra, etc., have the spots gotten better at all? I noticed most of the comments were that it did not work, etc. But, I understand that it is not to be used as a cure. It is used for anti-inflammatory purposes and helps cut down on the large ulcer sores. That is how it was explained to me by the derm. Just like some use tetra for acne for years; same sort of deal with the PLEVA.

Thanks and sorry again for any upsetting or "angry" comments I may have mistakenly posted,

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Wednesday August 13, 2008, 05:59:58 PM

3.  My daughter's PLEVA has turned into dime sized ulcers.  They have left large chicken pox like scars.  Three on the face.  Many on her body.  She'll be in the tanning both faster than a wink next time I see it go that direction.  J is right, it happens very quickly. 


I found that the best results were from consistent sunlight exposure. You might want to put a little sunscreen on the scars on her face. Scars tend to darken when you get older (no research available, just experience).

I know sunlight exposure is hard with a Type 1 tanner like your daughter. Just be careful, but not too careful. Aim for a light pink that produces a white spot when you press on it. If you press on the pink skin and the pink comes right back, you've gone too far.

My wife is between Type 1 and 2. She has to be very careful. I'm about a Type 4, which is odd because I have very fair skin and blue eyes ... but hey, who said these genes were linked. With a light tan I find it hard to get any browner unless I hit the pool around midday. Two hours after midday, I can sit around without sunscreen and get nothing, and I am at latitude 38. When I worked outdoors in Florida, you would have thought I was made of mahogany. I was 20 at the time and my PLC went into complete remission.

Here's a website with some tanning info, I make no claims about its accuracy (I don't want to start an exchange!).

http://www.pinkfridge.com/hab_tanning/skin-types.htm
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Wednesday August 13, 2008, 06:46:20 PM
Hi again,

Just wondering if anyone has used the tanning booth with a young child - and in young, I mean 3 years old or younger. When I approached the subject of the light box with our derm, he looked at me as if I were crazy. He said he has never recommended it to any of his younger patients. But, he gave me a referral to the laser center anyway just to check it out. I set up an app't there with Dylan, and of course, only one doc had ever seen PLEVA before, and it was in his residency like 20 or so years ago. He did not recommend it because of the risk of harm to little ones; like, if he took the goggles off, his eyes could be damaged; if he moved around, he could get burned, etc. But, I know the light box is different than a tanning bed. I wonder if that would be safer and considered an alternative. Any ideas? I have only been in a tanning bed once in my life and swore to never go back. I just did not like it. But, I do remember having to wear protective eye coverings. That is my main concern with Dylan. He is too little to understand to keep those on and stay still.

Oh, and as for everyone who has tried or is trying a type of antibiotic like erythro, tetra, etc., have the spots gotten better at all? I noticed most of the comments were that it did not work, etc. But, I understand that it is not to be used as a cure. It is used for anti-inflammatory purposes and helps cut down on the large ulcer sores. That is how it was explained to me by the derm. Just like some use tetra for acne for years; same sort of deal with the PLEVA.

Thanks and sorry again for any upsetting or "angry" comments I may have mistakenly posted,

Shauna


Sorry gang to keep quoting the whole message as a block. I don't know how to break it up.

Shauna, I never perceived your tone as angry, so no apology necessary. To answer your questions:

1. No, I've never had any response from antibiotics, steroids or creams.

2. About a three year old following directions like "don't take the goggles off" ... as a father of boys, I have to say: It depends. I trained one of my sons to climb safely when he was three, and let me tell you, the sight of a three-year old 30 feet up in a tree is unnerving, but he never fell. Ever. Even off a stool. And his climbing behavior escalated over the years. Another son was different about calculated risks. He wouldn't take them. Ever. So in my experience, a three-year-old can understand safety instructions. That doesn't mean he will. You know your son.

I don't see how you could get burned on a tanning bed. As for the eyes, you could get Dylan a pair of cool goggles, the kind that filter UV completely and turn the room purple. Put them on with a tie-strap around his head, so he can't easily take them off. Put him in a tanning bed where you can watch him like a hawk. Give him a safety reminder every time he gets in. Don't forget to wear goggles yourself. Watch the exposure time and ramp it up slowly.

Also, put sunscreen on him when he goes out to play. Overexposure can happen on an arm or a face, not just a back or a chest when you're at the beach. The only time I ever burned was a faulty sunscreen application that left some of my skin uncovered when I was a kid.
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Thursday August 14, 2008, 11:14:55 PM
BLX,

Hi again. So, I am pretty interested in the tanning bed alternative. We were approved for the light box treatment through our insurance co. so could go that way without much cost out of pocket. But, was it you who said the tanning bed was better than light box? There is something with UVB or UVA??? Not sure. If that was you, explain please.

If we do decide to go the tanning bed route, I have a few questions for you...

Where do I get the cool goggles that wrap around the head and completely block the rays for Dylan?

Should I be concerned about cleanliness? I have heard stories of people contracting various fungal infections and such from tanning beds. Maybe I should clean it myself before Dylan enters.

He tans easily and quickly and turns very brown. You can see from his picture, he has dark hair and eyes. He has yet to burn in the sun. So, maybe start with 5 minutes for a couple weeks then up to 10? I probably would not go past 10 for him. He just needs to keep a light tan to keep the bumps minimal and from turning into ulcers. He is already tan from the beach - all except where his bathing suit was.

Anyway, let me know what you think about all that - tanning bed or light box, etc.

I really appreciate the advice.

Shauna

Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Saturday August 16, 2008, 02:35:14 AM
BLX,

Hi again. So, I am pretty interested in the tanning bed alternative. We were approved for the light box treatment through our insurance co. so could go that way without much cost out of pocket. But, was it you who said the tanning bed was better than light box? There is something with UVB or UVA??? Not sure. If that was you, explain please.

If we do decide to go the tanning bed route, I have a few questions for you...

Where do I get the cool goggles that wrap around the head and completely block the rays for Dylan?

Should I be concerned about cleanliness? I have heard stories of people contracting various fungal infections and such from tanning beds. Maybe I should clean it myself before Dylan enters.

He tans easily and quickly and turns very brown. You can see from his picture, he has dark hair and eyes. He has yet to burn in the sun. So, maybe start with 5 minutes for a couple weeks then up to 10? I probably would not go past 10 for him. He just needs to keep a light tan to keep the bumps minimal and from turning into ulcers. He is already tan from the beach - all except where his bathing suit was.

Anyway, let me know what you think about all that - tanning bed or light box, etc.

I really appreciate the advice.

Shauna



If your insurance will pay, that's great. I am not an expert on light boxes, because I've never seen one. I used a stand-up box at the tanning salon or a horizontal bed at my health club (until the lawyers shut it down).

You asked a question about safety for Dylan, who is three. I suggested a tanning bed because you can keep an eye on him (as long as the eye is shielded). Again, if Dylan can follow ordinary safety instructions, it doesn't really matter. I would repeat those instructions every time he uses it, just like they do with adult factory workers. Begin each session with a safety lecture. Go with the light box if you trust his judgment, or if you can keep an eye on him somehow.

You can get some cool goggles via internet shopping. Just google "tanning goggles" ...

I said nothing about UVA or UVB, but I googled a commercial bed vendor website and here's what I found: Commercial tanning salon equipment in the US must have about five times the UVA as natural sunlight, per FDA regulations, so as to promote tanning. I don't know what ratio of UVA/UVB a medical light box uses.

Since Dylan's a dark tanner like me, I suspect your biggest problem may be increasing the tanning time. The more tan you are, the less sunlight gets through your melanin to the deeper layers of the skin. Since they have no idea why sunlight controls PLEVA/PLC, this might require increasing the time as he gets tan. I really don't know. One other person on the board told me that five minutes a day in a commercial booth worked. What I did was gradually increase my time as I got darker. I guess we have to experiment ourselves because there's almost no drug company or government money for research. (The curse of a rare disease.) At a certain level of exposure, he will probably have no bumps. Mine used to clear completely above the suit, then come back when winter arrived.

As for cleaning it, I think the UV light would kill almost anything on the surface. However, there are diseases that are spread by gym mats like MRSA going around ... so wiping the surface down with a Clorox wipe would give you true peace of mind. Nothing survives bleach. You can also make up about a 15% bleach solution in a jar and dip a rag in it. That's how I disinfect things around my house.
Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Saturday August 16, 2008, 07:33:55 AM
Hi Shauna:

I use the light box at the derm's office once a week. I am only in there for 1 minute 4 seconds. You start low and work your way up. I have also tried the tanning beds. You only get UVB with the box not the UVB and UVA you get with the beds. Only using UVB is suppose to cut down on the damaging rays. The one advantage I see for you is that you can stand in the room with him as long as you have eye protections on (they give or sell special protectors) and he will only be in there for 30 seconds, rather then minutes. My derm is treating several kids at his office, one of which is one of my students (she has very bad ecxzema). Also, he can stand up and turn slowly so he will be busy rather then just having to lay there.  It's fast and easy and I notice improvement every time I go. You can try each one and see which you prefer.
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Saturday August 16, 2008, 08:08:25 PM
That sounds like excellent advice. I think the short time period is good, because most three year olds have an attention span of at least a minute. You're really trying to get the part under the bathing suit and boost the exposure he gets at the beach. Experiment.

Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Sunday August 17, 2008, 10:17:55 PM
Another suggestion...have him get the lights in his tidy whities. I go in my panties with no bra and roll my underwear way down. The boxes are usually in a private room in the doctor's office so it'snot likes he's parading around other people.  Get him some special spiderman underpants, or whatever character he loves and make those his special "light day underwear". The best thing would be a thong but I don't know what type of emotional damage that might cause! Explain to him why it is important for him to keep the goggles on and then get him a treat after the light treatment, ice cream, whatever. Also, you will need goggles and sunscreen for yourself while you stay in the room with him. My derm sells the goggles for 3 bucks. I feel it's safer at the doctor's office  because the people administering the lights are trained nurses, they know to go up gradually, they know the exact frequency, they should even have the protective gear there. In Los Angeles most of the tanning salons are run by teenagers and I always worry whether or not they know what they are doing!
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Monday August 18, 2008, 02:09:52 PM
I don't want to make anyone uncomfortable, but I thought the concept of a light box was that Dylan could expose the area under his swim trunks. As a parent who has been through the toddler years, I can testify that most three-year-olds have little concept of modesty. I doubt that a thong would do any kind of emotional damage. He would probably go running down the hall to show it to strangers. I am no expert in psychology, but I doubt that simple nakedness would do any emotional damage. This is a medical setting, and a medical problem. Being naked in a light box will prepare Dylan for those adult visits to the hospital where the flimsy cotton gown has no back.
Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Monday August 18, 2008, 05:37:07 PM
Actually his penis will have to be covered for protection. That is why the doctor's have you wear underwear. So perhaps a thong it is! With the light since it is intense and covers your body you will notice improvement on all bumps...it's systemic.
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Monday August 18, 2008, 06:12:39 PM
Wow! Thanks for all the advice. I actually have to take my youngest (7 month old daughter) for a well visit tomorrow. Then, Dylan has a follow-up visit with the derm on Wednesday. So, I know my derm is opposed to tanning beds, so I thought I would ask the opinion of the regular pediatrician as to what she thinks of tanning beds v. light box therapy. I am also going to talk with the derm a little more in depth about the light box therapy. I just want some dr.'s opinions before I decide. If I do go the route of the light box, we have already been approved by insurance and have met with the derms at an office close to where we live. They have never had a 3 year old patient or seen PLEVA, but there is always a first.

And, as for the protective gear for his genital area - is that because the rays could harm him say in later years when trying to conceive a baby? If so, will just ordinary underwear protect him much?

And, I agree with BLX that I am wanting to use the beds to get where the sun does not - under his trunks.

Thanks. I will let you all know what we decide.

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Monday August 18, 2008, 06:52:21 PM
UVB doesn't penetrate beyond the skin, so protecting future generations is not the reason. UVB is responsible for most of the tanning response, and burning, which is why sunscreens target UVB. lindadiane is probably just concerned about burning his most sensitive skin. PLEVA/PLC generally doesn't appear in the genital area, but it does go after the hips and buttocks. I don't know what you can rig up to cover the genital area, but I think a washrag, a little athletic tape and some imagination might work.
Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Tuesday August 19, 2008, 06:07:14 AM
The genital skin is much more sensitive and delicate then arm skin, or even skin on your tush, so it is more prone to burning. I am pretty sure that's what the docs are concerned about....plus, would you want to have a burn there - ouch!! Yes, a junior jock strap would probably be a great solution...and no mental trauma - the major league uses them!
Title: Re: Pityriasis Lichenoides Chronica
Post by: bhmars on Thursday August 21, 2008, 11:53:58 PM
Hi Everyone, I have been reading the post and thought I would let you all know that I went for my check up today to the derm. and I asked her about tanning beds.  She calls them "community light therapy" ;) instead of tanning beds. I thought that was funny!  She also said she thinks that it is perfectly fine for me to use one as long as I do not get burned.  She suggested a slow increase in time each time I went.  i.e....2 mins. 4min. 6 mins. until I could be in the "community light therapy box" for no longer than 7 or 8 mins. at a time.  I am not using it to get tan but  it sure does help the way mine looks!  I have a question for anyone,  does anyone get biopsies regularly when they go for their checks?  I am wondering because my derm. did not think it was necessary?
 
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Saturday August 23, 2008, 12:30:03 AM
Hi Everyone, I have been reading the post and thought I would let you all know that I went for my check up today to the derm. and I asked her about tanning beds.  She calls them "community light therapy" ;) instead of tanning beds. I thought that was funny!  She also said she thinks that it is perfectly fine for me to use one as long as I do not get burned.  She suggested a slow increase in time each time I went.  i.e....2 mins. 4min. 6 mins. until I could be in the "community light therapy box" for no longer than 7 or 8 mins. at a time.  I am not using it to get tan but  it sure does help the way mine looks!  I have a question for anyone,  does anyone get biopsies regularly when they go for their checks?  I am wondering because my derm. did not think it was necessary?
 

I only got one biopsy. I think once they've determined that you have PLEVA or PLC, there's no need for further biopsies.
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Sunday August 24, 2008, 01:32:04 PM
Hi bhmars,

My understanding from my docs is that it is only necessary to rebbiopsy if the PLC/PLEVA starts to look different.  In my case, if the PLC spots get larger (the individual spot) than a "quarter" (about 1 inch) in diameter, and if they look extremely angry (or rather, more than normal).  In all these years of PLC, I've never had this happen.  When we were first diagnosed, we did have a couple of biopsies to confirm, but that was it.  Some suggest rebiopsing every few years to rule out any CTCL/MF, but this is so rare; and besides, if you start to see your PLC look weirder than normal, you'd probably bring it to your doc's attention anyway.  Incidentally, there are so many PLC lesions clustered together everywhere, that at times (particularly in the less sunny months), they can look like one giant one.  But if you look at it against the light, you can see that it is many, verses one individual one. 

Hope that helps,

J
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Monday August 25, 2008, 11:58:31 PM
Hi everyone!

I had Dylan to the dermatologist for his check-up last week. He did not recommend the tanning bed at all but was ok if I decided to take him for light box therapy. Although, I am having a difficult time finding an office comfortable working with a 3 year old. But, I also spoke with Dr. Spraker, another pedi derm, who works at Emory about Dylan. She saw him once when I was seeking out a second opinion. I was ready to start taking Dylan to her office (45 minutes away) for light box treatments. She called to ask why I was driving so far. After explaining everything to her, she disagreed with Dr. Caputo (our regular derm) and told me just to find a tanning salon nearby. She said with the limited exposure he would be getting, she saw no greater risk of getting skin cancer as if he just went outside daily. She said the tanning bed would control the lesions as well as potentially help the disease burn out. Then, I might be able to stop the erythro. She told me to start out slowly - twice a week 3 to 5 minutes and increase to no more than 10 minutes 2 or 3 times a week.

Anyway, I think that is what I am going to do. I found some of the tanning goggles with the strap on-line and ordered them. I also think I may just let him keep his little underwear on in the bed. He does not have many lesions in that area. He mostly just needs to get his upper legs exposed as well as the undersides of his arms.

He is starting to break out again. We have been back from the beach for 2 weeks now and have not been able to be outside at the pool much. The weather has been cool and rainy. But, I just wondered if that is pretty much the norm - to be pretty clear and than all of a sudden, flare up. He has some pretty large and red lesions that just appeared in the past couple days. They don't seem to bother him, but they are quite "angry looking."

Thanks for all the advice from everyone. I do think we are going to try the tanning bed for a while though and see what happens. I just cannot bear to see him covered in red lesions for the entire fall and winter months again. It is hearbreaking. If the sun actually helps the disease burn out, I am praying the tanning bed will do the same and maybe help him to be rid of this by next summer. Any thoughts? J, especially. I know your daughter is out in the sun a lot and has had to deal with this for years. Do you think the sun helps burn it out or it just needs to run its course?

Anyway, again, just looking for thought, advice, anything since most of you have had this or have a child who does.

Thanks,

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: Shauna on Wednesday August 27, 2008, 12:29:42 AM
Ok, so none of the tanning salons near my home will allow me to put Dylan in their beds due to his age. So, that idea is out the window. I may have to call my derm and find an office comfortable doing light therapy on a 3 year old

And just wondering...Bhmars told me that her derm said PLEVA messes with the immune system during outbreaks. Do any of you know anything about that and why it would be so only during outbreaks? My derm keeps saying Dylan's immune system is fine. I find that hard to believe though.

Shauna
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Wednesday August 27, 2008, 05:41:35 PM
Ok, so none of the tanning salons near my home will allow me to put Dylan in their beds due to his age. So, that idea is out the window. I may have to call my derm and find an office comfortable doing light therapy on a 3 year old

And just wondering...Bhmars told me that her derm said PLEVA messes with the immune system during outbreaks. Do any of you know anything about that and why it would be so only during outbreaks? My derm keeps saying Dylan's immune system is fine. I find that hard to believe though.

Shauna

Sorry for the bad news about the tanning salons. The good news (maybe) is that PLEVA or PLC never messed with my immune system.

You could get Dylan one of those European bathing suits and go to the beach. Or just get him a Speedo. The other alternative (expensive, I know, but it depends on your financial situation) is to buy a tanning box or bed of your own. In any case, keep trying. I wish someone had clued me in to the UV therapy when I was first affected.
Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Thursday October 02, 2008, 12:09:28 AM
How's everyone doing? I finished 6 months of Z packs and I am improved but not cured and with the weather changining I have been itchy. My doc wants me to go to UCLA with him one day and have a bunch of different doctors look at me...sounds like fun, not!
Title: Re: Pityriasis Lichenoides Chronica
Post by: Looknhelp on Thursday October 02, 2008, 02:01:07 AM
Hey Everyone,
  Well, I ended up here after doing hours upon hours of research for my husband...we finally got a diagnosis of PLC and PLEVA after 2 weeks of waiting.  I would love to talk with someone through email ([email address removed]) about your own experiences with this.  I pretty much had done all of the research before his diagnosis, when it was presumed he had this, so I knew most of what the doctors told us when it was confirmed.  I have a feeling that this is somehow related to psoriasis, though I could be wrong.  I am currently doing some research myself via internet to seek out psoriasis treatments to try and see if there is any help with that route.  My husband has been experiencing these breakouts for about 1 month, and it started off as 4 "bugbite" looking spots on his right foot.  It has now spread up his legs (though not the inner thigh), onto his arms, and only a couple on his side (between stomach and back).  Some of these look very different from others, and I'm told that the "V" in Pleva stands for various forms.  I found a q&a website that links this with Herpes 7, though I haven't been able to find much of anything on that particular thing.  I did however find that herpes 7 is one of the only in the herpes family that has unknown contraction....so, we're right back at square one...answering questions with questions.  This can get very frustrating.  :-[  I would very much like to have him try the tanning bed or light box, but he can't presently because of being on tetracycline, which you can't use with sunlight!  Is there anyone that has had any progress with any topical treatments applied directly?
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Thursday October 02, 2008, 06:34:48 PM
Hey Everyone,
  Well, I ended up here after doing hours upon hours of research for my husband...we finally got a diagnosis of PLC and PLEVA after 2 weeks of waiting.  I would love to talk with someone through email ([email address removed]) about your own experiences with this.  I pretty much had done all of the research before his diagnosis, when it was presumed he had this, so I knew most of what the doctors told us when it was confirmed.  I have a feeling that this is somehow related to psoriasis, though I could be wrong.  I am currently doing some research myself via internet to seek out psoriasis treatments to try and see if there is any help with that route.  My husband has been experiencing these breakouts for about 1 month, and it started off as 4 "bugbite" looking spots on his right foot.  It has now spread up his legs (though not the inner thigh), onto his arms, and only a couple on his side (between stomach and back).  Some of these look very different from others, and I'm told that the "V" in Pleva stands for various forms.  I found a q&a website that links this with Herpes 7, though I haven't been able to find much of anything on that particular thing.  I did however find that herpes 7 is one of the only in the herpes family that has unknown contraction....so, we're right back at square one...answering questions with questions.  This can get very frustrating.  :-[  I would very much like to have him try the tanning bed or light box, but he can't presently because of being on tetracycline, which you can't use with sunlight!  Is there anyone that has had any progress with any topical treatments applied directly?

They know nothing whatsoever about the cause of this disease. Repeat ... nothing whatsoever. That is the bad news. Mine lasted for two decades, but it follows various paths. It gets better and then worse. My doctors tried tetracycline, cortisone, and various expensive creams with no effect. (Sometimes there seems to be an improvement and then it gets worse, so no one is sure if these drugs do anything at all.)

Now for the good news. Ordinary sunlight is usually a very effective treatment. My PLEVA/PLC would clear up very rapidly (within a month) when I went to the pool every day in the summer. Light boxes are just a substitute for when you can't use sun. My first dermatologist insisted on tetracycline treatments, which made sun impossible. I had to wait over a decade before a knowledgeable dermatologist clued me in about sunlight. (She told me the way they discovered this was that patients returning from a beach vacation would be cured except for the areas under the bathing suit.)

Title: Re: Pityriasis Lichenoides Chronica
Post by: Looknhelp on Wednesday October 08, 2008, 07:52:16 PM
BLX,
  Did you have any luck at all with the tetracycline?  My husband has been on it for almost 2 weeks and there may be a very, very slight improvement, but not enough to consider it working so far.   A friend gave us some tanning bed passes and we are thinking that we may try this next week, after going off of the antibiotic.  I am praying that something will work.  My husband is dealing with this well, mostly, but has days that his self esteem is really taking a hit.  He doesn't want people to look at him like there is something wrong with him.  We feel we have good doctors, but they admitted that there isn't much to do.  They advised against the tanning, which comes as no surprise, seeing as they are dermatologists.  But in low doses, I don't think it will be much worse than the sun itself.  We don't want to just sit and do nothing.  I'm planning to make some major changes to our diet next grocery shopping trip, as I have began to feel like what you put in your body affects everything that goes on with it.  I am also planning to try some pharmaceutical quality vitamins and detox products (a PA suggested this quality instead of regular ones you buy on the shelf, because of fillers like sawdust in them) to see if there is any help with this. 
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Wednesday October 08, 2008, 08:43:59 PM
Welcome to the world of we all have something else to say and do about everything!  :laugh:

I was diagnosed with PLC when I was 49, 3 years ago, and have had to go with trial and error to find a system that works for me. I use an excellent dermatologist at VCU and together we whip up ideas of what I can do to make the disease liveable.

Spring and Fall are good times for me, I can get outside in the sunlight. However, I have MS and cannot withstand temps above 80F without my central nervous system failing. So, during those times, I use a tanning BOOTH (I don't stew in other's juices) where I tan no more than 5 minutes a day. Anything more than that is overkill. Whatever you do, DO NOT ALLOW YOURSELF TO BURN! I can tell you from experience that a sunburn with PLC is the worst!

My doctor and I agreed that I try (and just finished) a 16-week cycle of zithromax, using a pre-packaged "Zmax" every other week. I really didn't see much difference.

The sun/tanning keeps my skin clear, but dry. I must use a water-based lotion on my skin (others are too heavy and clog my pores making it even more unconfortable and itchy) at all times.  My case is somewhat different than others because I am allergic to tetrecyclene and I must inject chemotherapy drugs every week. So, things that work with others, don't necessary work for me.

The itching is the worse. You don't know how often I want to get in the bath/shower and soak in hot water. Unfortunately that is one of the worse things to do, drying your skin something terrible. Always take a warm shower or bath. After my shower, before drying I use baby oil gel all over (lightly) which seals the moisture into my skin. I like the lavender type, as lavender is a healing herb for the skin. Of course I use the gel after showering at night, so I can put on cotton pajamas and let it soak in all night as I sleep.

I hate having people stare at me, I haven't worn shorts in years, but I decided this year, the devil with them. I am not contagious and wasn't going to let them ruin my life because I have PLC. I started swimming at the gym again and, after many complaints from the other members, I had my doctor provide the gym with a note specifying that I am not contagious and there's nothing anyone at the gym can do now. Their problem, not mine. :D

I've read all of the data I can find about PLC and find much of it to be outdated. For instance, every article I've read states that it generally shows up in childhood around the age of 7 and the child will outgrow it at puberty. I was 49 when I got it and I guess that means I haven't reached puberty yet?

One thing that helps me tremendously is to get acrylic nails. They aren't as thin and sharp as our own nails and I can't scratch anything open.

Good luck with your endeavors to beat this mess. I've seen some really strange suggestions for cures to some really sensible ones. I think it's every one for their own -- trial and error. I found no difference with the food I eat, so I went back to my usual diet. I have read of people who have cycled out of this in just a few months, others in a few decades. I don't expect much, and I'm not disappointed.

Sorry, I know this doesn't help you much, but there aren't many here who are doctors - just lay people like you and I who are searching for an answer to something that affects each of us in a different way. Good luck in your search!

Regards,
Elseaeff
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Wednesday October 08, 2008, 09:50:24 PM
BLX,
  Did you have any luck at all with the tetracycline?  

None at all. Neither with diet. Sunlight. Tanning beds are just watered down sunlight, with a lot of the "bad" (good) UV removed. They do reach areas under the suit, which is good, but ordinary sunlight works best.

My opinion and experience is that as long as you don't allow yourself to burn, the harmful effects of sunlight are far outweighed by the good effects on PLEVA/PLC. Your husband's dermatologist notwithstanding. It was a dermatologist who recommended sunlight and tanning beds to me, so if you're uncomfortable with going against medical advice, get another doctor with different advice.

Tell him to have hope. Sunlight won't cure this, but it can send it into complete remission. And he'll have a nice tan.

Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Wednesday October 08, 2008, 09:55:58 PM
I hate having people stare at me, I haven't worn shorts in years, but I decided this year, the devil with them. I am not contagious and wasn't going to let them ruin my life because I have PLC. I started swimming at the gym again and, after many complaints from the other members, I had my doctor provide the gym with a note specifying that I am not contagious and there's nothing anyone at the gym can do now. Their problem, not mine.
Elseaeff

Good for you. People are ...

If you haven't got something nice to say...

Anyway, I'm glad the sunlight is working. It sounds like you're dealing with a lot.
Title: Re: Pityriasis Lichenoides Chronica
Post by: emmamae on Friday October 10, 2008, 10:28:21 PM
Hi all, I have posted on a couple of different threads here about my little girl who was diagnosed with Pleva 7 weeks ago. I am trying to stay positive as she has been PLEVA free now for one week today. Now of course I am  walking on eggshells playing the waiting game of when is it coming back and how much will it be when it does? ( she had lesions in the hundreds) I am a complete mess whenever we do anything new as since I don't know for sure how she got this in the first place. We went to the pumpkin patch yesterday and with the hay, horses, sun etc I was freaked the whole time that something out there would trigger her pleva. We are also going to Disneyland next weekend and though I know the sun will be good for her, I am also afraid the overheating will not. Ugh. I really, really don't want this to come back.
Does anyone have any suggestions on what we can do to keep this away? I am so shocked that it is even gone now after only  6 weeks. I am thinking because she was diagnosed so early on that maybe we just got lucky? We did two rounds of zpack and three weeks of topical steroid cream. I feel so helpless all the time on how to protect her, she is only 4 and I clearly cant keep her in a plastic bubble, but I am petrified of what can trigger it again. Has anyone out there ever heard of it just plain not coming back at all? Is that possible???? Also, besides stress and heat, what other triggers have people experienced?
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Saturday October 11, 2008, 03:39:23 AM
 :hi: Hello emmamae!
I'm sorry to hear that your daughter has been cursed by PLC/Pleva. The only good thing I can say is that she is young enough not to be affected by the bigotry of others who don't understand the nature of and lack of cure for this disorder.

The description for PLC says that it comes from the unknown and it waxes and wanes as it pleases. I have spoken to those here who have had it for decades, others for months. I was diagnosed at 49 and am now 52. My PLC is still cycling, staying more often than not. It affects each person differently as does solutions to controlling it.

You cannot cause it to 'happen' or 'trigger' PLC. It comes when it wants to come. Sunshine is actually good for it, but sunburn is not. Hot baths/showers is not good for it. I found that water-based creams work best for keeping my skin moisturized except when I've bathed. Before drying I use a baby oil gel to seal the moisture into my skin. I keep my skin moisturized several times a day and my derm has advised me to take as few showers/baths as possible. That doesn't mean for me to walk around stinking and dirty, just don't take one every day if I don't really need it. Allowing the skin to dry out is a sure way to cause the PLC to become worse than what it is.

Some have found success with erythromyecn (sp?) but I am allergic to it. I just finished 16 weeks of a Z-pack treatment, taking a Z-pack every other week. I really saw no difference.

Lavender oil is conforting, you can purchase it at the Body Shop or other places. The usually use grapeseed, flax oil, and several other oils as carriers for the lavender.

The doctor's 'light box' was helping, but with the cost of gas, a 90 mile round trip and $20 copay to go 5 days a week was too expensive for me. She told me that 5 minutes a day in a tanning booth would do the same, however, most states have laws against those under 15 using a tanning center. Tanning lights for the face or upper body aren't that expensive and you could purchase one of those for use at home. As small as she must be, she could get all-over tanning with a small light.

You've got to stop your worrying about everything you do - she can pick up on your worry and make her worry. As far as not wanting this to come back, forget it. It will decide when it will and won't resurface. It's important that you keep her from scratching. I have acrylic nails because they are thick and I can't scratch anything open with them. It's not gone, it's just gaining strength for the next attack. They used to say it would go away at puberty, obviously that is not the case.

I don't mean to give you bad news, but it's better than getting sugar coated lies. As I said, this condition can last weeks, months or years. I've also got Multiple Sclerosis and was sure the interferon and other drugs I must take was the culprit for my PLC. But there is not explanation for the cause, no solution to the cure. You've got to stay strong, stop fretting and let her know it's not abnormal for her to have these pustules.

Many of us would like to keep our children in a plastic bubble - one of my sons is in Afghanistan, my daughter in a terrible relationship. All we can do is love them and protect them as best we can. If she learns that this disorder is something natural for some people, she'll be able to cope with it, as you need to do.

Good luck to the both of you!

Regards,
elseaeff
 :bighug:
Title: Re: Pityriasis Lichenoides Chronica
Post by: Karen19 on Saturday October 11, 2008, 07:26:08 PM
I totally agree! I was diagnosed with PLEVA about 3 years ago. (I am 49 now) It has largely subsided, but still comes and goes whenever it feels like it, with no rhyme or reason. My oldest son has had severe eczema his entire life (he is now 25) and if I had stopped him doing things which made his skin worse he would have missed out on a lot of living. He has learned to take the rough with 1the smooth. One thing I do know....Worrying about what might happen will only stress you out and that will definitely make things worse
Title: Re: Pityriasis Lichenoides Chronica
Post by: emmamae on Sunday October 12, 2008, 01:30:32 AM
Yes, I agree with your comments on not stressing and logically I realize this, however, not easy to do sometimes, as I am still trying to wrap my head around the fact that she even has PLEVA. As I am sure how it happens with everyone, it just came out of nowhere. Her dermatologist seems to think that typically with younger children a lot of times it just doesn't come back and it burns itself out... sooo this has left me with the thought of how can I make sure that happens. The other thing that I have read with most people when it does come back, it is never as bad as the first episode. Is this the same in your case as well? I feel it would be much easier to handle if it wasn't in the hundreds. I feel so bad for her, I just don't want her to go through grade school/high school with this.  Thank you for your responses, I feel for everyone going through anything like this, and my heart goes out to all.
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Sunday October 12, 2008, 05:16:11 PM
Karen19 and elseaff are telling you what we sufferers have learned through many hard years of experience and investigation: Doctors don't know squat about PLEVA/PLC ... they don't know the cause, prognosis, or any effective treatment other than UV light. What all of us here have learned is that the disease gets better and worse, strikes any age, lasts as long as it wants to, and changes form ... or not ... over time. We're lucky they can even diagnose it with a biopsy.

This disease is sufficiently rare that dermatologists don't see more than a case every 3-6 months. It is rare enough that drug companies have little interest in pursuing a cure. It is non-lethal, so no one is ever going to pursue a cure with public money. It is socially awkward enough that no one is ever going to organize a "Walk for PLEVA/PLC."

What you WILL get is doctors who want to experiment with your daughter with diet and drugs, doctors who look it up in a textbook and make uninformed pronouncements, and doctors who warn you away from the ONLY proven and effective treatment: sunlight.

The only GOOD news is that sunlight works. If you want some insurance against a relapse for your daughter, get her about 5 minutes of all-over UV light a day, as close to the natural spectrum of the sun as possible. If that doesn't work, up the UV dose. In 20 years I was only in complete remission when I had a nice tan. But don't believe us. Find a specialist in this disease (it is possible if you're near a large city) and he or she will tell you the same thing. I finally did.

Title: Re: Pityriasis Lichenoides Chronica
Post by: emmamae on Sunday October 12, 2008, 08:56:45 PM
Luckily, our doctor is a pediatric dermatologist at UCSF who happens to specialize in PLEVA. She currently alone has 50 PLC/PLEVA patients right now under her care. She has been dealing with PLEVA for 25 years. She did mention doing light therapy with our daughter if needed. So far other than the natural sun she hasn't needed it. It would probably be our next step if this comes back as strong as her first episode. I am still hoping for a miracle that this wont come back or not come back as strong as before. Her doctor was surprised to see it gone after only 6 weeks so who knows. I guess you could say I am cautiously optimistic. We live in northern CA and have been able to get her out almost daily in the sun. I just get concerned with her overheating as it seems this in the past would aggravate it a bit. This is all still so new to me and yes it does seem trial and error is the only path to go and every individual responds so different to any treatment. I think it sucks that doctors don't do more research as it seems just from this board alone there are plenty enough people out there with this to warrant some research. I also think it sucks that apart from our dermatologist  no one else had a clue as to what she had. Anyways I am everyday just getting more use to this and trying to learn all I can.  Which is why I am so thankful to find this board and be able to talk to people who actually have this and I can learn from others. When you say you were in complete remission, does that mean you still are? Or does it mean as soon as you stop getting out in the sun does it come right back? How long have you had it? If and when it does come back for you, is it 100's of lesions or a few?
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Monday October 13, 2008, 02:16:44 AM
All I can testify to is my own experience. I had PLEVA/PLC of varying severity (10-200 lesions, spots to large ulcers) from age 16 until about age 36 (hard to tell because I started consistent tanning booth therapy about age 32, on the recommendation of a dermatologist, after which I had no more spots until the light therapy was interrupted by the birth of my first child at 36, and it never came back).

Overheating can aggravate the ulcers, but there's no evidence that it causes them. Do not avoid the sun on this basis.

By complete remission I mean that getting a lot of sun while working outdoors in the Florida summer at age 20 sent it into complete remission for months. We are talking a heavy brown tan. (And yes, there was some measure of "clothing optional" activities that summer.) It didn't come back for months after I went back to college.

There is very little useful to "learn" about this disease, except that it responds well to sunlight. Sunlight doesn't cure it, but it controls it very well. Why dermatologists don't use UV therapy as a first line treatment is beyond me. We are not talking about a lot of exposure here, just a few minutes in a tanning booth every day. Most of the problems of UV exposure come from heavy tanning or sunburn. Yes, I know the "no safe limit" arguments, but PLEVA/PLC is a nasty, uncomfortable, disfiguring disease that leaves scars like bad chickenpox. That's worth the small theoretical downside of sunlight IMHO.

Title: Re: Pityriasis Lichenoides Chronica
Post by: galpal on Monday October 13, 2008, 06:30:12 PM
Hi Emmamae,

My daughter's PLEVA started when she was 6.  She is 8 now and still has it.  It is so much better though.  I obsessed over it when she had lesions in the hundreds so I tried fish oil, antibiotics, acidiphillous, vit D, antioxidants, sea salt from the dead sea, special lotions, Goji juice....You get the idea.  None worked.  It went away completely during bathing suit season (except under her suit) so I put two and two together and stopped everything else, including antibiotics.  We use 50 SPF during peak hours.  She is Irish fair so I'm very careful and allow 10 minutes or so of non peak sun with no sunscreen.  The effects of the sun lasted into January last winter and then the PLEVA returned. Not nearly as bad. So this winter I will look into light therapy.  Hopefully, a minimal amount will do the trick.

Good Luck. 
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Monday October 13, 2008, 07:40:07 PM
Hey galpal, that's interesting. I've always wondered if the very fair-skinned didn't have it easier in the tanning booth than us type 4 tanners. While I am fair-haired and blue-eyed, I tan like a piece of mahogany. Once tan, my skin seems to filter sunlight better than sunblock. I used to spend 10-20 minutes in the booth to get the desired effect. It would have been nice to spend only a few minutes instead. One thing to be aware of: tanning booths do not have as much UV-B as natural sunlight. You'll have to experiment with exposure.

Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Tuesday October 14, 2008, 03:25:49 AM
Dear BLX42,

I don't think that it's true about the tanning booths being less powerful than the booths. The maximum time for a tanning bed at my center is 30 minutes, but only 20 minutes in the booth. Then there's the rocket booth that has a 5 min. maximum!

I guess it depends on the tanning center and the equipment they offer!

Regards,
Elseaeff :cf:
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Tuesday October 14, 2008, 06:51:33 PM
I looked it up. It depends on the bed, with home beds having more a little more UVB spectrum than tanning salons (due to the construction of the lamps). I kept seeing that home and commercial beds have 3 to 8 times more UVA in the mix than natural sunlight, whatever that means. After all, natural sunlight ... at what time of day, under what atmospheric conditions, at what elevation, at what time of year? Anyway, we both know the tanning salons work, and they are what my good derm recommended to me (not the narrow-band dermatologist office variety). I think we can all agree that there is something in the UV light spectrum that PLEVA/PLC just hates ... and our skin needs ... regardless of the source.

One caution to newbies: Tanning beds and booths emit very powerful UV light (about 100x the sun) so you don't have to spend hours in them. Because of this, you need proper eye protection, since it will go right through your eyelids. Get good goggles.

Title: Re: Pityriasis Lichenoides Chronica
Post by: gojoepa on Tuesday October 14, 2008, 10:49:41 PM
Folks,

I have had PLEVA/PLC for 3 years.  The first outbreak was outrageous (almost whole body) but then it subsided and stubbornly attacked my legs only and that is where it has stayed.  Anyhow, my great Derm suggested daily sunlight.  Since I couldn't sunbathe daily I bought a Dermalight handheld unit - the type people often use for Psoriasis that affects the scalp.  Since I only had about 20 spots, I could just blast the light on the spots every day and it only took about 10 minutes total.  It really did help alot.  When summer came I was lucky as I could go swimming in the Meditteranean (I lived in Italy the past 4 years).  The combo of the Dermalight and the swimming almost totally cleared it up. 

The point is, the medical sunlight devices you can buy will deliver the healing UVB rays only (and not the nasty UVA rays) and you can buy them in various sizes to treat large or small areas.  This means you can avoid the misery of tanning beds, the high cost of going to doctors' offices for light treatments; you can treat yourself at home in privacy, and you can also avoid tanning your whole person when you only want to treat small areas.  Google "Psoriasis UBV" and you will find many links to sites that sell these home light treatments.  Best wishes to all of you...Pleva is the pits!



Title: Re: Pityriasis Lichenoides Chronica
Post by: emmamae on Wednesday October 15, 2008, 12:30:43 AM
Thank you to all for all the advice. My daughter is very fair skinned Irish/Scottish and Dutch. She tans even with sunscreen on. We have been getting her out every day. However with winter coming I don't know what we will do. Her doctor did mention to us that she would  use  Light box therapy if it ever got as bad as it was, but I don't know if she will let us do that unless it is in the hundreds.There are no tanning bed places out here that will allow me to bring in my 4 year old. I am happy to hear that for most people when they come back it doesn't seem to be as bad as the first episode. My daughter had it on her neck to her knees, groin included.
Title: Re: Pityriasis Lichenoides Chronica
Post by: Tina45 on Monday October 27, 2008, 03:04:27 AM
Hello everyone,

First, let me say I am new to this site, and new to PLC. Second, I am so glad to have found all of you. I wish I had found all this information about a month ago.
I didn't completely understand the information I was finding. My dermatologist had no information just prescribed steriods and antibiotic. I thought that I had a weak immune system the reason for the PLC. So what did I do? I went and got some supliments to boost my immune system! :doh:(I can see many of you cringe already). It wasn't untill yesterday when I fell apon the information Bunny posted #383? and the subsiquent posts that followed that I undersood my immune system isnt weak, it's already in overdrive! So, I am sure you can figure out what happened... I am busting out all over. I am itching like crazy! My spots aren't just angry looking they are to the point of being insane! :evil: I just about cried when I found the information Bunny and the rest of you posted. Then I started laughing because I was so happy to know there are some answers to my questions. I was very interested in the light therapy. I live in Northern California and the weather has been pretty nice so far. My problem is I am at work indoors during the day and get little or no sunlight (especially where I REALLY need it). Looks like a tanning salon is my best bet. I was just wondering if I should contact the derm and see if he will give me another round of aniboitics or try the light therapy first? I hated taking the steriods as they really effected my memory and such. I was just diagnosed about 2 months ago(but have had this since about April) and did the first round then. Is it too early to do another round of antibiotics & steroids this soon?
Thank you all so much for taking the time to share your stories and information. You are all a blessing for someone like me. You all have touched so many lives like mine who thought they were lost at sea. I have found a light house!

Tina45
 
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Monday October 27, 2008, 06:25:02 PM
Sorry to hear you have PLEVA/PLC Tina.

My recommendation, do the light therapy. It works. The steroids and antibiotics don't work, although they may seem to work sometimes because outbreaks come and go. Diet modification doesn't work. UV light works. Use good judgment with light therapy, of course.

Bunny has a different disease from PLC. She has presented some theories here, but they are just theories with no hard evidence. Here is a fact: The doctors do not know what causes PLEVA/PLC. They don't know if it will last 2 months or 20 years. There is no good research on a cause or cure. The only significant research finding is that UV light controls the outbreaks in almost every case. You have to keep the UV treatments up or the spots will come back. Be prepared to have an all-over, year-round tan.

Your doctor can look this up if he likes. I am assuming he has done a biopsy to confirm the diagnosis.

Good luck. There are worse things than having a nice tan.
Title: Re: Pityriasis Lichenoides Chronica
Post by: Samuel9817 on Wednesday October 29, 2008, 05:35:58 PM
Hi guys it's me again,

My PLC/PLEVA lessions have finally started to fade out a bit. I started doing the whole herbal tea thing (Sarsaparilla and Burdock) along with tetracycline. I still get new outbreaks but not a much as before. It's starting to get cold here in NY and I think it's gonna come fast and furious at me, during the summer it was practically gone.

A friend of mine told me about Boryx anyone ever triend this, did it work ??
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Wednesday October 29, 2008, 06:23:59 PM
Hi guys it's me again,

My PLC/PLEVA lessions have finally started to fade out a bit. I started doing the whole herbal tea thing (Sarsaparilla and Burdock) along with tetracycline. I still get new outbreaks but not a much as before. It's starting to get cold here in NY and I think it's gonna come fast and furious at me, during the summer it was practically gone.

A friend of mine told me about Boryx anyone ever triend this, did it work ??

Do you mean Doryx? This is a type of delayed-release doxycycline. It has the same photosensitivity warning as tetracycline ... not a terribly good thing when UV light is the most effective treatment for PLC/PLEVA. (I was given all these antibiotics back in the late 1960s with no success.) Have you tried UV?
Title: Re: Pityriasis Lichenoides Chronica
Post by: CalamityJane on Thursday October 30, 2008, 01:01:50 AM
Hi BLX - I can't find the tetracycline drug Doryx -- does it have another name? Perhaps depends which country one lives in?

Jane
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Thursday October 30, 2008, 08:11:16 AM
Dear Jane,

The tetracycline drug for which you are seeking is doxycyline. It is very strong and I found myself allergic to it, causing hives and fever.

Regards
elseaeff
Title: Re: Pityriasis Lichenoides Chronica
Post by: CalamityJane on Thursday October 30, 2008, 03:41:57 PM
Dear Jane,

The tetracycline drug for which you are seeking is doxycyline. It is very strong and I found myself allergic to it, causing hives and fever.

Regards
elseaeff

Hi, thank you! Doxycycline put my skin disease into remission for 18 months........so I had a very favourable result. Everybody is different. I suppose you are sensitive to all the tetracyclines?

Jane
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Thursday October 30, 2008, 05:38:28 PM
Dear Jane,

The tetracycline drug for which you are seeking is doxycyline. It is very strong and I found myself allergic to it, causing hives and fever.

Regards
elseaeff

Hi, thank you! Doxycycline put my skin disease into remission for 18 months........so I had a very favourable result. Everybody is different. I suppose you are sensitive to all the tetracyclines?

Jane
Jane, for the record, what skin disease do you have?
Title: Re: Pityriasis Lichenoides Chronica
Post by: CalamityJane on Thursday October 30, 2008, 08:17:31 PM
Quote
Jane, for the record, what skin disease do you have?

PPP.

Jane
Title: Re: Pityriasis Lichenoides Chronica
Post by: galpal on Tuesday November 04, 2008, 07:07:00 PM
Just wondering...

Has anyone ever tried a laser skin treatment for pleva/plc?  I bet it would work on the hyperpigmented scars but I also wonder what would happen if you zapped a newly erupting outbreak. 
Title: Re: Pityriasis Lichenoides Chronica
Post by: mompres2008 on Thursday November 06, 2008, 10:20:41 PM
 ??? Hi Everyone, I'm a 46 year old female just diagnosed with PLC. I'm so new that I can't even pronounce it properly yet! I was diagnosed based on a skin biopsy. I had a bunch of lesions (for lack of a better word) on my neck that spread to my face (yeehaw) and chest. I even have some now at the top crease of my thigh (this just keeps getting better). They started as small pimple/bug bite type things that had a small head and were itchy. They eventually grew, broke open and crusted and scabbed, repeat, etc. Some are very small and don't go much beyond the itchy pimple looking stage. Others are quite large and take forever to heal, and leave marks behind. I'm not an overly vain person, but man I can't stand them all over my neck! I can't cover them at all. I haven't gotten my prescriptions yet (1 for a tetracycline product, another for a cream) so I'll hold out help they'll help.  My dermatologist didn't say much other than that it's unusual and can last for a few months to a year. Since I never heard of it before I didn't even know what questions to ask. So here I am doing research to figure this out. I have three questions I thought you all could help with.

1. I just had a biopsy - no blood test or anything else. Does this sound right to you?

2. Should I being seeing a specialist other than the Derm, who wants me to check back in 2 months?

3. People think I have staph or MRSA! This isn't contagious right?

I appreciate any info any of you can provide. Thanks, Pat (USA - Boston area)
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Thursday November 06, 2008, 10:46:40 PM
??? Hi Everyone, I'm a 46 year old female just diagnosed with PLC. I'm so new that I can't even pronounce it properly yet! I was diagnosed based on a skin biopsy. I had a bunch of lesions (for lack of a better word) on my neck that spread to my face (yeehaw) and chest. I even have some now at the top crease of my thigh (this just keeps getting better). They started as small pimple/bug bite type things that had a small head and were itchy. They eventually grew, broke open and crusted and scabbed, repeat, etc. Some are very small and don't go much beyond the itchy pimple looking stage. Others are quite large and take forever to heal, and leave marks behind. I'm not an overly vain person, but man I can't stand them all over my neck! I can't cover them at all. I haven't gotten my prescriptions yet (1 for a tetracycline product, another for a cream) so I'll hold out help they'll help.  My dermatologist didn't say much other than that it's unusual and can last for a few months to a year. Since I never heard of it before I didn't even know what questions to ask. So here I am doing research to figure this out. I have three questions I thought you all could help with.

1. I just had a biopsy - no blood test or anything else. Does this sound right to you?

2. Should I being seeing a specialist other than the Derm, who wants me to check back in 2 months?

3. People think I have staph or MRSA! This isn't contagious right?

I appreciate any info any of you can provide. Thanks, Pat (USA - Boston area)


Hey there,

I'm sorry you are experiencing this tragic disease. There are a few methods you can try which may help supress the spots;

1. Take cold - luke warm showers - This prevents flaring of the spots making them less noticeable. It also in my opinion makes the environment less optimal for whatever is causing the disease. So you should also try and stay in cool places and not rug up too much. Although it can be a bit embarassing and I often wore jumpers to hide the lesions on my arms.

2. Use a sensitive soap wash with vitamin E- This has two advantages. It is good for your skin. And also, if you apply it before you have your 'cold' shower, you can easily scrub up in less than two minutes. You get used to it.

3. Apply your perscribed derm cream about twice a day (including before you go to bed).

Then you have a choice of treatment, which I think you've already chosen:

i) Two tetracyclines tablets, twice daily - (this was the final treatment I was on before my spots went) - try to avoid direct sunlight.

ii) UVB therapy - usually you go into your derms office three times a week for light therapy. You can also go to a tanning booth.

As for your questions, biopsy is normal nothing to worry about. It's the general way they confirm that it is PLC. It's up to you if you want to find a specialist, but a derm should be fine. Check ups are normal.
I remember when I first got the disease, everyone thought I had the chicken pox. You get a few people that think it's contagious, it's just presumtions that people make when they see an unusual patch of lesions on someone. But this disease is completely non-contagious.

Finally, my condition lasted about a year. It appeared in mid-summer on my stomach. I was originally on light therapy but then switched to tetracycline half way through. A few months later my lesions slowly disappeared. Are you asthmatic or have any other conditions?

Regards,
PLC4ME
Title: Re: Pityriasis Lichenoides Chronica
Post by: emmamae on Thursday November 06, 2008, 11:37:12 PM
Hi Plc4me, I was just wondering how long you have been pleva free now? My Daughter had it for 6 weeks and has been pleva free now for almost 6 weeks as well, the only thing she still has is the pigmentation spots that are not very noticeable as she is so fair.
It is nice to hear from people that have been pleva free for sometime as it gives me hope that maybe, just maybe she might not get this back.....
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Thursday November 06, 2008, 11:43:38 PM
Hi Plc4me, I was just wondering how long you have been pleva free now? My Daughter had it for 6 weeks and has been pleva free now for almost 6 weeks as well, the only thing she still has is the pigmentation spots that are not very noticeable as she is so fair.
It is nice to hear from people that have been pleva free for sometime as it gives me hope that maybe, just maybe she might not get this back.....

Hey Emma,

I've been free for around 3 years now. I'm almost 20. 6 weeks is a really short time for this chronic disease. After 3 years I have no scarring or anything from the spots. But I did get in a good routine of eating healthy and keeping clean. I still use the sensitive soap. I'm not sure how much time this disease may lay 'dormant' in the body but I hope I don't get it again, nor your daughter.

PLC4ME
Title: Re: Pityriasis Lichenoides Chronica
Post by: emmamae on Thursday November 06, 2008, 11:53:31 PM
Thank you, yes her dermatologist was very surprised too that her skin cleared up so fast. She only could say that maybe her little body just fought it out quicker than the norm and that we are lucky, but she said to not be surprised if it comes back. We still go in for another check up in a week. I feel like I cant let my guard down with her at all, but I have come across a few people now who have been pleva free for sometime so there is hope.  She has very sensitive skin and now I am very careful about making sure she doesnt over heat or wear any kind of material that may irriate her. She also has a peanut allergy so that is always in the back of my mind as to if allergies and autoimmune are related etc.
Did your come and go for the three years and if it did, when it came back, was it as bad as the first outbreak?
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Thursday November 06, 2008, 11:59:40 PM
Thank you, yes her dermatologist was very surprised too that her skin cleared up so fast. She only could say that maybe her little body just fought it out quicker than the norm and that we are lucky, but she said to not be surprised if it comes back. We still go in for another check up in a week. I feel like I cant let my guard down with her at all, but I have come across a few people now who have been pleva free for sometime so there is hope.  She has very sensitive skin and now I am very careful about making sure she doesnt over heat or wear any kind of material that may irriate her. She also has a peanut allergy so that is always in the back of my mind as to if allergies and autoimmune are related etc.
Did your come and go for the three years and if it did, when it came back, was it as bad as the first outbreak?

Nup it's been gone for 3 years straight now. No reoccurences. Have you ever had to use one of those epipens for her peanut allergy?
Title: Re: Pityriasis Lichenoides Chronica
Post by: emmamae on Friday November 07, 2008, 12:04:05 AM
She has an Epipen that we carry with us everywhere, but lucklily she has never had to use it. I am so happy to hear that your pleva has been gone for 3 years, it is such a scary thing to have and especially sine there is so little known about it. Do you have allergies too?
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Friday November 07, 2008, 12:08:35 AM
I know! It's because it's such a rare condition, hardly any incentive for anyone to do any in depth research. The only obvious thing I'm allergic to in Penicillin. But yeah, as you said, there is little known about this disease, and what causes it. So if it was an allergen that caused it, it's best to be on the safe side using sensitive soap wash. And I must be doing something right if it hasn't come back in 3 years! :D
Title: Re: Pityriasis Lichenoides Chronica
Post by: Dianaoon on Friday November 07, 2008, 02:28:15 PM
Dear All:

It's been Awhile since I've visited this, I joined two years ago when my son, now aged 5 yrs 10 mos, was diagnosed with PLC, almost 2 yrs after the symptoms first appeared. It took three derms before we got a diagnosis from a biopsy, and after half a year where he went on low dose steriods followed by anti biotics (no change to frequency of new spots) I just gave up on medication and concentrated on keeping his skin hydrated and tried to minise the irritation factors.

Just a word on the virus / immune system debate. My paed derm explained to me that PLC manifests as spots under the skin because the immune system is rejecting a virus present in the body. In my son's case, it's a benign CMV (cyto megalo virus?) which shows up in his bloodwork. No idea what it was, nor how long it will stay in his system, but as long as it does, the PLC will too. My son's approaching 6 yrs and the spots first turned up at 18 mos. My paed says, and she has seen, these cases resolve spontaneously, at puberty, for children having PLC. That's for 80 % of the time and the other 20 %, too bad. :(

I read somewhere that rubbing cold pressed sesame oil on the skin helps, and I have been, for 2 yrs now. My son's paed derm praises the softness of his skin, and that it's not as dry as it could be, with the scarring, etc from the PLC. He also does not scratch if we oil him twice a day after bath time. (we live in the tropics). Hot water and heat does make him more uncomfortable, so we try to stay cool as far as possible.

I am not sure if it is an ancillary effect of the PLC, but my son is also hyper sensitive to preservatives and additives, things which are not labeled well in our part of the world. He comes out in hives after having something dodgy.

I have tended to keep his diet 'clean" as possible - organic where possible, little processed food and minimise trans fats, cirtually no junk and fast foods, same goes for sweets, etc. I also supplement with fish oil and more recently coconut oil, latter is again, cold pressed extra virgin organic supplement. Since using the coconut oil, his spots have reduced noticeably, I am not sure if it's because he's getting older, or the CMV is diluting, or the cononut oil, which is meant to be an immunity booster, is helping.

Generally, my son has learnt to live with the PLC, it does not bother him 98% of the time. Of late, the spots show up less and less, but still turn up, so his  skin is pretty scarred. His skin is patchy particularly on his upper arms and upper thighs. His back and torso have improved a lot in the last year, so we live in hope. I hope you all coping with this will find some improvement, or at least, an acceptable steady state.

I just wanted to share this with you all, and hope that someone can shed more light on living with PLC with me.

Diana
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Friday November 07, 2008, 05:35:36 PM
??? Hi Everyone, I'm a 46 year old female just diagnosed with PLC. I'm so new that I can't even pronounce it properly yet! I was diagnosed based on a skin biopsy. I had a bunch of lesions (for lack of a better word) on my neck that spread to my face (yeehaw) and chest. I even have some now at the top crease of my thigh (this just keeps getting better). They started as small pimple/bug bite type things that had a small head and were itchy. They eventually grew, broke open and crusted and scabbed, repeat, etc. Some are very small and don't go much beyond the itchy pimple looking stage. Others are quite large and take forever to heal, and leave marks behind. I'm not an overly vain person, but man I can't stand them all over my neck! I can't cover them at all. I haven't gotten my prescriptions yet (1 for a tetracycline product, another for a cream) so I'll hold out help they'll help.  My dermatologist didn't say much other than that it's unusual and can last for a few months to a year. Since I never heard of it before I didn't even know what questions to ask. So here I am doing research to figure this out. I have three questions I thought you all could help with.

1. I just had a biopsy - no blood test or anything else. Does this sound right to you?

2. Should I being seeing a specialist other than the Derm, who wants me to check back in 2 months?

3. People think I have staph or MRSA! This isn't contagious right?

I appreciate any info any of you can provide. Thanks, Pat (USA - Boston area)

I had PLEVA/PLC for 20 years ... from age 16 to about age 36. Here are some answers:

1. A biopsy is the correct way to diagnose PLEVA/PLC. (However, you may want to get a second biopsy from a different lab. No one is perfect.)

2. There are no specialists. This is a rare disease.

3. This is not contagious.

What is known: PLEVA/PLC comes and goes. It can last 3 months or 30 years. It leaves scars. The only 100% effective therapy in clinical trials is UV light. Ordinary sunlight is a primary therapy. (Doctors figured this out when they saw patients coming back from the beach, cleared of all spots except those under the bathing suit. Later, they did a handful of clinical trials with artificial UV light.) Other therapies like antibiotics are possibly effective, but effectiveness is hard to determine because the disease comes and goes, and individual spots clear without treatment. Antibiotics may prevent infection of lesions, but in 20 years I never had an infected lesion, and some of mine were bleeding ulcers the size of a dime.  (Antibiotics and steroids and immunosuppressive derm creams never worked for me; that is, never kept new spots from appearing.) The type of UV light that seems to work best is ordinary sunlight. Tanning booths also work, as do specialized UV treatments. UV light is not a cure. It only controls PLEVA/PLC outbreaks, so UV treatments must be continued.

Things to not worry about: Diet does not seem to be a factor. Allergies do not seem to be a factor. "Sensitive skin" does not seem to be a factor. Heat and cold do not seem to be a factor, except heat may be uncomfortable and make the lesions appear redder.

What causes it: According to the medical profession it is either an autoimmune disease, or caused by and infective agent (virus, bacteria, ?), or caused by an overreaction of the immune system to an infective agent. In other words, who knows? But knowing why you have it is not as important as knowing how to treat it.

What worked for me: Sunlight, tanning booths (on the recommendation of a good dermatologist). This led to a complete remission (no spots).

What didn't work for me: Everything else. And I tried everything else religiously ... antibiotics, steroids, diet, immunosuppressive creams, hypoallergenic soaps, and voodoo dolls.

Last word: If you do use UV light (which I recommend), use common sense. Don't get sunburned or use more sunlight than necessary. Sunlight has its downside, particularly if used to excess. If you have to use light therapy over several years, it is worth experimenting to find the minimum necessary to effect complete remission.

Title: Re: Pityriasis Lichenoides Chronica
Post by: TheLadyB on Tuesday November 11, 2008, 02:16:40 PM
Hi All!  I have had PLEVA for 4-1/2 years now.  Sometimes it is worse, sometimes it is better.  It took 22 weeks to diagnose, and that in itself is a long ridiculous story.  When I was diagnosed, I found a website that said there had only been 17 reported cases of PLEVA in the UK, and NO CASES reported in the US.  I was devastated, and now that I am reading these comments, I am astounded at how untrue that fact was!  Look at all of these people coming together and saying YES I HAVE PLEVA/PLC TOO!

When I first broke out with PLEVA, I read an online diary of a lady that had had it for 16+ years, and she stated that the only time she did not have spots was when she was pregnant with her children...  I found this to be true as well.  The entire time I was pregnant with my son I only had about 5 spots, while I was breastfeeding they still remained minimal, although there were more spots than when I was pregnant.  When I stopped breastfeeding, I broke out all over again.

Does anyone think that maybe a doctor somewhere might catch on to this?  Maybe there is a hormone that is released in pregnancy that could be given to patients to help control the PLEVA.

Also - when I broke out for the first time, I was living in Wisconsin where it is very cold and I was wearing clothes that were heavy and warm.  I've read different comments here about sweating and heat being a factor in breaking out.  I believe that it is not the heat or the sweating as much as FRICTION.  I say this because my buttocks seem to be the worst, and that is where I have the most clothes on a regular basis.  I no longer live somewhere cold, and I don't wear such heavy clothes on the rest of my body, but my buttocks always has underwear and pants over it...plus, I am constantly sitting on my rump at work at my desk, and at home at night when it is time to rest.  My bottom seems to get the most friction of anyplace else on my body, and my bottom is always the worst part of my breakouts.

I WOULD LOVE TO SEE PEOPLE CHATTING ABOUT WHERE THEY WERE, AND WHAT THEY WERE DOING, WHEN THEY BROKE OUT FOR THE FIRST TIME.  WE ALL KNOW THERE IS NO INFORMATION ABOUT PERMANENT CURES.  WE KNOW THAT PEOPLE OF ALL AGES, FROM ALL OVER THE WORLD, ARE BREAKING OUT WITH THIS CONDITION.  LET'S TAKE IT UPON OURSELVES TO SEE IF WE CAN FIND A COMMON CAUSE THAT MAY LEAD US TO A SOLUTION, and NOT JUST TEMPORARY SALVES AND ANTIBIOTICS!!

As for me:  I WAS LIVING IN A VERY OLD HOUSE AND HAD JUST SCRUBBED/CLEANED OUT THE ATTIC AND THE BASEMENT (heaven knows what kinds of things I may have gotten into while cleaning these out), MY ROOMMATES HAD CATS (I have no known allergy to cats, but I also haven't lived with them often), IT WAS AUGUST (what time of year did you all break out?), I HAD BEEN USING AN OLDER RAZOR BLADE (I doubt this had to do with PLEVA since children are affected too), I WAS COVERING MYSELF IN A BABY OIL GEL AFTER EACH SHOWER (could this have been smothering my skin and not giving it enough oxygen?), AND I WAS HIGHLY STRESSED.

Are any of these things similar to what was going on in the lives of other patients when they first broke out?  Please let me know!  In the meantime, I will try to remember anything else that was going on in my life at that time.

PLEVA AND PLC PATIENTS UNITE!!!!
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Wednesday November 12, 2008, 07:24:47 AM
Hello there,

Very interesting story.

Especially about the pregnancy part. When you're pregnant you have high levels of chorionic gonadotropin? as well as follicle stimulating hormone and leutinizing hormone. Stimulated by the release of progesterone and estrogen.

Female contraceptives mimic the state of being pregnant so you skip ovulation (as if you were pregnant). So maybe that is a potential cure? Has anyone experimented with the pill? It would be interesting to know.

As for when my outbreak occured, it was in summer, and I was doing nothing out of the norm (that I can remember). I just remember it being a pretty hot time (i think it was a heat wave). It first occured on my stomach then spread. That friction thing is a good idea though, I did seem to get the worst (and itchiest) parts between my legs and bottom. The rest of my body was still covered, but not as itchy.

Regards,
PLC4ME
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Wednesday November 12, 2008, 06:28:24 PM
The pregnancy thing is interesting. However ...

It is natural to associate two things that happen close together in time, and assume one causes another. It can also be misleading.

B.F. Skinner, in his classic 1947 paper 'SUPERSTITION' IN THE PIGEON, described experiments in which pigeons were fed pellets on a regular schedule. Each pigeon developed a different behavior (turning counterclockwise, bobbing head, etc.), based on what it was doing when the food pellets first arrived. The "superstitious" pigeons kept doing what they were doing because that behavior "caused" the food pellet to come.

In the same way, we seek to assign causes to events based on closeness in time. This behavior is both pre-rational (hardwired in the brain) and rational (because causes are often associated closely in time with effects).

However, associations of this sort should be the start of investigations, not used to draw conclusions.

If you think about it, we are always doing something. We are eating something every day. It is always some time of year. It is either warm or cold. Our skin is either sweaty or dry. My first thought at my first outbreak was to think that the physical exercise or lack of sleep might be a cause. But my rational brain took over, because when these conditions changed, the outbreaks continued.

The pregnancy experience is interesting because pregnancy is known to correct a number of health conditions, and cause others. It is worth experimenting, if that hasn't been done already. But the experiment must be controlled with a number of patients to rule out the spontaneous remissions and irregular outbreaks typical of PLEVA/PLC. That will be difficult, because it is a rare disease.

But not impossible. UV light treatment was first discovered by observing that sufferers returning from summer vacations had cleared up in all the areas exposed to sunlight. This observation was later supported (but not completely confirmed) with controlled clinical studies using artificial UV light.

"No randomized controlled trials have been performed in Mucha-Habermann disease. Since the disease course tends towards self-resolution, evaluation of treatments without adequate controls cannot result in rational recommendations."--www.emedicine.com/derm/topic334.htm

The problem of find causes or treatments is the disease's rarity. It would be hard to get a patient population together for good trials. "In approximately 44,000 patients seen over 10 years in 3 catchment areas in Great Britain, 17 cases of PLEVA were diagnosed."--Ibid
Title: Re: Pityriasis Lichenoides Chronica
Post by: emmamae on Thursday November 13, 2008, 12:32:52 AM
Hi, I think the pregnancy thing is very interesting as it would point to a  hormone theory. It is the same theory with children on how so  many doctors believe if you contract Pleva/plc as a child then 80% of children would outgrow it by puberty, which is also a hormonal change. I saw the same article on the internet as well about the lady who had this for 16 years.
My daughter got it in August and since it was in the middle of summer it was very hot, she had a day camp that she had been at for a week she also had open scratches on her leg that she would pick at constantly, so she had open boo boos at camp/gymnastics.... lots of places with tons of kids... I was actually scared she was going to get MRSA or something by the way she wouldn't stop picking at her scratches. She started out with 2 spots on her upper back that looked like bug bites, within in a week it was around 100 spots and within 2 weeks I could say at least 300 or more on her entire body.
It would be so nice to know where and when, but when I think back on this summer, we did so many things, parks, playdates, Disneyland, camps, gymnastics. Who knows?
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Thursday November 13, 2008, 11:39:27 AM
I found the pregnancy thing interesting.  I read an article way back in Sc. American that during pregnancy, since a woman is carrying a fetus w/ 50% of the DNA not being hers, she produces something that stops her body from rejecting it.  (Researches were looking into this as a potential option for people who have had organ transplants).  I don't remember any details, etc.. but they did mention diseases being suppressed by pregnancy.  I didn't see PLC/PLEVA there, but I did see MS.  I know practically nothing about MS except that it is autoimmune, and the myelin sheath on the nerve is destroyed, I think. Obviously, we all know PLC/PLEVA is autoimmune. 

I agree w/ BLX that we, as humans, see patterns in everything.  That's what makes us so smart, I guess.  Maybe there is a connection, maybe not.  I wish I had the answers. 

PS If any ladies w/ PLC/PLEVA are out there, who are on birth control, I'd be interested to hear if it had an effect. 

J
Title: Re: Pityriasis Lichenoides Chronica
Post by: nomorepr on Friday November 14, 2008, 01:48:05 AM
Is PLEVA/PLC related to pityriasis rosea? (Since they all have the "pityriasis" part in common.)

I first had pityriasis rosea in 2005. The spots resolved in 3-4 months, in 2 waves. I was told I would not get it again.

It's now 2008, and I've been suffering pityriasis rosea AGAIN for over 4 months. I don't know why my spots aren't clearing, but they seem to be related to the antiviral I'm taking (Valtrex)--which, oddly, is supposed to suppress the rash not cause it.

Since you aren't supposed to get pr twice, might this be something else? Is pr a precursor to PLEVA/PLC? Thanks for any input.
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Friday November 14, 2008, 12:22:31 PM
Is PLEVA/PLC related to pityriasis rosea? (Since they all have the "pityriasis" part in common.)

I first had pityriasis rosea in 2005. The spots resolved in 3-4 months, in 2 waves. I was told I would not get it again.

It's now 2008, and I've been suffering pityriasis rosea AGAIN for over 4 months. I don't know why my spots aren't clearing, but they seem to be related to the antiviral I'm taking (Valtrex)--which, oddly, is supposed to suppress the rash not cause it.

Since you aren't supposed to get pr twice, might this be something else? Is pr a precursor to PLEVA/PLC? Thanks for any input.

"pityriasis" means "dry and flaky"

As far as anyone knows, PR is not related to PLEVA/PLC, except that they are both dry and flaky and on the skin.

Title: Re: Pityriasis Lichenoides Chronica
Post by: nomorepr on Saturday November 15, 2008, 05:57:43 PM
Thank you very much. I had thought pr for an extended period of time (4 months and new pustules still forming qualifies) would turn into plc. They sure do look alike. Not all my spots are the same, and some look more reminiscent of plc than pr.

Does everyone with plc get the "frosted glass" appearance? I have yellow, not clear, frosted glass when the pustules break.

Is there any evidence of a viral etiology for plc? I have seen a few people on this board have success with acyclovir (I am taking a form of acyclovir called valacyclovir). Unfortunately, valacyclovir is what triggered my pr again and again, and switching to acyclovir or penciclovir did not help. Even worse, valacyclovir is not a med that I can just quit taking.
Title: Re: Pityriasis Lichenoides Chronica
Post by: Samuel9817 on Saturday November 15, 2008, 10:55:01 PM
Hi BLX - I can't find the tetracycline drug Doryx -- does it have another name? Perhaps depends which country one lives in?

Jane



Hi Jane, my Dermatologist prescribed Doryx for me and it seems to be working fine. My spots have started to disappear and the itching has completely stopped so I'm hopeful. It's not for everyone, he says it can cause upset stomach and lots of flu like symptoms.
Title: Re: Pityriasis Lichenoides Chronica
Post by: CalamityJane on Monday November 17, 2008, 02:09:14 AM
Hi there, what doseage was prescribed, and for how long a period of time? Thanks. Doxy put my PPP into remission for 18 months.....but sadly, but not unexpected, it's back! :'(

Jane
Title: Re: Pityriasis Lichenoides Chronica
Post by: KK on Monday November 17, 2008, 05:22:07 PM
Hi. I've not posted for a long time here & don't even know if I'm going about it the right way but, here goes.  I was diagnosed with Pleva last March (after my initial rash began last September), which seems to have morphed into PLC. It's now been over a year since it began.  Last fall my body was covered all over with bleeding spots that itched horribly and I was diagnosed through a biopsy.  Now that it's PLC, my rash seems different than in the past.  It looks more like a regular allergic rash and kind of ebbs and flows, mostly on my neck, chest, torso & arms.  Somtimes my hip bones as well.  The rash doesn't seem as bad on my legs.  Has anyone else noticed that the appearance of their rash has changed over time.  My dermotologist noticed it doesn't look as clear cut anymore, but we are going on the assumption that it's the PLC.  I was, and am still, wildly itchy esp. at night.  I do have trouble sleeping.  Any help?
Title: Re: Pityriasis Lichenoides Chronica
Post by: bhmars on Tuesday November 18, 2008, 12:01:22 AM
Hi Everyone,
I haven't posted in a while but nothing has really changed for me.  I did start going to a tanning bed on a regular basis and I am clearing up and I have not had another outbreak!  Lets hope this continues :) Tanning does seem to be leaving dark pigmented areas where I had spots but I don't really care because it is clearing up!  I figure the dark spots might fade over time and it doesn't bother me.  The pregnancy thing is interesting because as I had said before, I got PLC 3 weeks after my baby was born.  It started like itchy bug bites all over my forearms.  I have always wondered if hormones have something to do with it because it was so soon after my baby was born and I was breast feeding.  I also have to note that it seems like autoimmune diseases run in my family, my sister has an auto immune disease.  Her autoimmune diesease manifested itself just 3 weeks in to her pregnancy. 
Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Tuesday November 18, 2008, 12:29:07 AM
Hi All:

I've been super busy and unable to post. I think this is related to stress and hormones and genetics. I broke out just after I went off birth control pills which I was on for perimenopause symptoms. My bumps get red and very itchy right before my period. In fact, I can tell when it's coming because my skin changes. My husband is convinced it will be gone once I go into menopause (which is taking forever). I have had this 6 years and I am 52. I just found out my cousin has MS and my sister has psoriasis. So there are immune diseases in my family. I am also allergic to penicillin. I was sleep deprived before I broke out. I thought maybe it had to do with travel...we had been to Europe and Caribbean. My skin gets worse with stress and little sleep. I was getting light treatments with my derm which was helping but decided to take your advice and hit the tanning salon every day. My skin does seem clearer, no new breakouts and I am much less itchy. Had to stop this week because of a nasty ingrown toenail that got infected. So I will keep you posted on my progress. In the meantime where does everyone live? I'm in Los Angeles.
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC4ME on Tuesday November 18, 2008, 12:43:21 AM
Hi All:

I've been super busy and unable to post. I think this is related to stress and hormones and genetics. I broke out just after I went off birth control pills which I was on for perimenopause symptoms. My bumps get red and very itchy right before my period. In fact, I can tell when it's coming because my skin changes. My husband is convinced it will be gone once I go into menopause (which is taking forever). I have had this 6 years and I am 52. I just found out my cousin has MS and my sister has psoriasis. So there are immune diseases in my family. I am also allergic to penicillin. I was sleep deprived before I broke out. I thought maybe it had to do with travel...we had been to Europe and Caribbean. My skin gets worse with stress and little sleep. I was getting light treatments with my derm which was helping but decided to take your advice and hit the tanning salon every day. My skin does seem clearer, no new breakouts and I am much less itchy. Had to stop this week because of a nasty ingrown toenail that got infected. So I will keep you posted on my progress. In the meantime where does everyone live? I'm in Los Angeles.

Hey Linda,

So why don't you just stay on the contraceptive pills?

I too am allergicto Penicllin! Maybe that had something to do with it.

So you're thinking it should go away when you go into menopause?

What about with men, since men keep secreting sperm to their late 90's even. I wonder what the oldest case of PLC is reported.

Regards,
PLC4ME
Title: Re: Pityriasis Lichenoides Chronica
Post by: emmamae on Thursday November 20, 2008, 01:00:13 AM
I know this is going to sound irrational.... but part of me thinks maybe my daughter picked up the virus when she was at gymnastics, just because of the timing and the fact that she had scratches that she was picking at with dirty gymnastics hands where 1,000's  of kids had been that day. I have not brought her back since she was diagnosed with PLEVA. At first I didn't bring her back because her body was so covered in spots and they wear those little leotards and  I thought children might make fun of her or make comments. Then I just never went back as I was never sure when and where she got this from...Now she is being invited to go back with some friends and she has been pleva free for over 7 weeks.
Has anyone out there ever thought that going to certain places may bring it back? I know it sounds crazy and paranoid. but I have a sick feeling in my stomach about it. If it is a virus and that same virus is still lurking around this place, can she get it again? Or can any virus she gets cause this as to how her body reacts to the virus? This sounds nuts I know, but I cant help it.
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Thursday November 20, 2008, 02:29:50 PM
Hi. I've not posted for a long time here & don't even know if I'm going about it the right way but, here goes.  I was diagnosed with Pleva last March (after my initial rash began last September), which seems to have morphed into PLC. It's now been over a year since it began.  Last fall my body was covered all over with bleeding spots that itched horribly and I was diagnosed through a biopsy.  Now that it's PLC, my rash seems different than in the past.  It looks more like a regular allergic rash and kind of ebbs and flows, mostly on my neck, chest, torso & arms.  Somtimes my hip bones as well.  The rash doesn't seem as bad on my legs.  Has anyone else noticed that the appearance of their rash has changed over time.  My dermotologist noticed it doesn't look as clear cut anymore, but we are going on the assumption that it's the PLC.  I was, and am still, wildly itchy esp. at night.  I do have trouble sleeping.  Any help?

Mine varied considerably over 20 years. What you are experiencing is very typical of PLEVA/PLC.

The only thing that worked for me was sunlight (and tanning salons). This cleared the spots completely. If you are not trying UV light consistently, then I hope you do. This will relieve your symptoms.

Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Thursday November 20, 2008, 02:43:15 PM
I know this is going to sound irrational.... but part of me thinks maybe my daughter picked up the virus when she was at gymnastics, just because of the timing and the fact that she had scratches that she was picking at with dirty gymnastics hands where 1,000's  of kids had been that day. I have not brought her back since she was diagnosed with PLEVA. At first I didn't bring her back because her body was so covered in spots and they wear those little leotards and  I thought children might make fun of her or make comments. Then I just never went back as I was never sure when and where she got this from...Now she is being invited to go back with some friends and she has been pleva free for over 7 weeks.
Has anyone out there ever thought that going to certain places may bring it back? I know it sounds crazy and paranoid. but I have a sick feeling in my stomach about it. If it is a virus and that same virus is still lurking around this place, can she get it again? Or can any virus she gets cause this as to how her body reacts to the virus? This sounds nuts I know, but I cant help it.

Nobody knows what causes PLEVA/PLC. There are three theories: It is caused by an infectious agent (virus, fungus, etc.); it is caused by an immune system problem; or it is caused by an immune response to an infectious agent. That pretty much covers everything except diet and space aliens.

You are right. It is "nuts" to assume she "caught" it from gymnastics. This disease can persist over decades, during which many lifestyle changes occur. It one of these initial conditions (like gymnastics) "caused" PLEVA/PLC, then it wouldn't persist.

The best advice I can give you is to make sure your daughter doesn't get some sort of emotional trauma from this disease. If she is PLEVA-free, why shouldn't she get healthy exercise at gymnastics? If you are worried about recurrences, and you should be, make sure her skin is getting some consistent UV light, which is known to suppress outbreaks.
Title: Re: Pityriasis Lichenoides Chronica
Post by: emmamae on Thursday November 20, 2008, 07:14:24 PM
Hi, no my daughter will not have any emotional trauma from this as it didn't even bother her one bit to have the spots, they didn't even itch her. The only thing we even discussed was her biopsy and her picking at the spots, which have been non issue for the past 7 weeks. My own fears, I keep to myself and do not put that on her. She does get outside daily, either at the park or at preschool, although sun is starting to get hard to come by.
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Friday November 21, 2008, 12:43:36 PM
No criticism intended. I'm glad to hear she didn't get self-conscious about the spots. However, as a parent, I know that kids pick up on their parent's fears no matter how we try to hide them.

I would let her go to gymnastics. We live in a sea of germs and viruses and fungi. We have immune systems to handle them, and generally, those immune systems work pretty well. Also, exercise is healthy. It keeps the body in balance. The trade-off of exercise versus possible exposure to germs is so heavily weighted in favor of exercise that it's no contest. If she were my daughter, I would try to see that she gets some mild UV exposure on a regular basis. PLEVA/PLC tends to recur in winter. But that is just me. You are the parent.
Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Friday November 21, 2008, 07:17:49 PM
PLC for me: I did not want to stay on the pills any longer. I do not think it’s healthy. I thought about going back on but my B/P is borderline. It goes up at the doctor’s office and is fine at home (white coat hypertension) so they do not want to prescribe the pills. I do think it will go away with menopause…I am hoping!!

Emmame: That is irrational. It is NOT contagious or everyone would have it. No one in my family has it. It’s an auto immune or inflammatory condition they believe is triggered.

Is there anyone else allergic to penicillin?
Title: Re: Pityriasis Lichenoides Chronica
Post by: ickyspots on Friday November 21, 2008, 11:15:43 PM
Hi all! 
So glad I found this thread here.  I didn't quite make it through all 29 pages ( :P) but it's nice to see a group of people who are knowledgeable.

I was dx'd with PR about 4 weeks ago after 3 weeks of having spots.  Doc told me 6 - 8 weeks and it would be gone or at least mostly healed.  I am in week 7 or 8 since the first spots appeared and I'm convinced it's not PR but PLC. I have another appt to see him and hopefully he'll give me a referral to a derm to get a dx or some further advice.  I don't like to self-dx off the 'net but in all the descriptions and images I've looked at my lesions are far more consistent with PLC than PR.  My shins and calves are the absolute worst (quite large and very red, but no bleeding or pussiness).  I have it on my arms and torso and feet as well.  Those spots are smaller and less red but still won't see to fade passed a pink color. 

I did go to a couple tanning sessions and didn't see much difference but that was when I first got the spots and they were still coming.  I gave up on it early (as I said I only went twice) but I'm thinking I'll return the first of the week and keep with it to see what difference it makes. 

I am 35 and I first noticed two spots (one on my arm and one on my shin) at the same time I was on penicillin for strep throat at the first of October. 

I have noticed that my overall skin quality (even where I don't have spots) is very, very dry which is not something I've ever experienced before.  I have used pure coconut oil to help with the dryness.  I experimented with some on my worst leg last night and this morning those bumps on my legs that were starting to dry were completely scaled over and when the scale is peeled of it is flat (not raised at all) but the spot is still very red.  Does that sound like what people have experienced??

I have only been showering in lukewarm water and try not to everyday.  I have been using goat's milk soap.

I live in Atlantic Canada and it is definately winter here (supposed to get a snowstorm tonight :D), so natural sunlight is out and our house is heated with wood, so the air is quite dry.  I am so glad I have this at this time of the year and I'm hoping I can get it under control.  Of course, I guess I should still be waiting to hear what my doc says next week and if I get to see a derm, but I am pretty sure it's PLC and not PR.

So here are my questions if anyone has made it this far and cares to answer:

1.  How long in the tanning booth at a time and how long before people saw results?

2.  Has anyone used pure coconut oil and what were the results?  maybe I shouldn't be using it?

3.  Has anyone had any results with vitamins or mineral treatments?


I think I am kind of in shock that I have this (whatever it may be), and have been wavering between being hopeful that I can get rid of it, happy that it's presented itself at this time of the year and depressed that it is so damn unsightly!!  I feel so bad reading about the little kids and teens that have this.

Thanks so much!

T.
Title: Re: Pityriasis Lichenoides Chronica
Post by: emmamae on Saturday November 22, 2008, 02:37:17 AM
My daughter went to Gymnastics yesterday and had a blast. I am very happy she went. She still does Ballet, but we had her out of Gymnastics for awhile, as you have all read.  Yes I do know how kids can pick up on our emotions as  my irrational thoughts were passed down to me from my Mom, I do try extra hard to really, really keep these fears to myself as much as any parent does when dealing with something like this.  Anyway, she had fun, she  had her derm apt today and is looking very good. We are keeping our fingers crossed all stays well with her.
Ickyspots, my daughter had dry skin in some places as well, although hers was mostly from the steroid cream she had to use. I just used Aquaphor on her everynight and it worked very well for her skin. I use this on myself and my youngest daughter as well as we both have Eczema and this is the only thing that doesn't dry or irritate our skin. Also for her baths, very lukewarm, and when she had spots we did everything we could to make sure she didn't over heat as when she did, it seemed to flare up a bit.
Lindadiane, my daughter is not allergic to Penicillin but she does have a peanut allergy. My youngest daughter who does not have PLEVA but does have Eczema is allergic to Penicillin. ugh.


Title: Re: Pityriasis Lichenoides Chronica
Post by: galpal on Friday December 12, 2008, 05:01:27 AM
Hi Emma,

I pulled my daughter from gymnastics also.  She was getting a lot of stares and everyone thought she had chicken pox...She is back at it now but I do think her immune system needed a good break when the spots were at their worse.  Her classroom at school had severe outbreaks of strep.  I still think her immune system was compromised/confused and she probably had strep but I didn't know it.  Your post brought it all back.  It has been two years since I went to the Docs the week before Christmas and...
She has NO spots right now.  I gave her a lot of sun in aug/sept and it does penetrate many layers of skin.  Last winter she was mostly spot free until late Jan, I think.  So far, she is even better this winter.
Good Luck Everyone...
Title: Re: Pityriasis Lichenoides Chronica
Post by: emmamae on Sunday December 14, 2008, 06:40:55 PM
Hi Galpal, thank you for your response, it is nice to hear from people who understand and have been there. My daughter has been spot free for a couple of months now as well. I am keeping my fingers crossed as the cold weather is not allowing us much sun exposure these days.

Has your Daughter had any vaccines at all since she was diagnosed with PLEVA? And if she did, did it seem to affect her PLEVA at all? I need to know more about autoimmune and vaccines etc. My daughter is going to be due for boosters soon and her derm said while she has spots she absolutely canNOT have vaccines. I guess because her immune system is  so compromised during that period. Now it has me wondering as she is spot free, I guess it is OK. Her pediatrician seems to think it is, but of course he had never even heard of pleva until my daughter.
Title: Re: Pityriasis Lichenoides Chronica
Post by: galpal on Monday December 15, 2008, 02:11:40 PM
I never thought about immunizations and pleva.  It does make sense to pull back (on everything) when an outbreak is happening.  Since she is good right now, I would give her the boosters while you can. 

I'm worried about this cold weather, too.  Is it just the lack of sun or the exposure to so much infectious stuff that triggers it in the winter?  Does the immune system get so overworked that it makes mistakes and attacks self?  I don't know but the last six months have been heaven without this stuff.  I'm learning as much as I can about the tcell, etc.  There is no cure but I'm looking for patterns of triggering agents.  Can't hurt.

Good Luck.
Title: Re: Pityriasis Lichenoides Chronica
Post by: emmamae on Tuesday December 16, 2008, 12:15:00 AM
Hi, I notice on this board  that there is not alot of mention of the connection to tcell lymphoma. It was HUGE concern to me when my daughter first was diagnosed with this.  My daughters derm said if she was going to get it, it would have happened within months of that first outbreak and she had us come in every 2 weeks to monitor etc.  Now that she is spot free I don't know if  she is in the clear of tcell of if this means she has a chance again with another outbreak. Her derm left me with the impression if she was to get it, it would have happened then and quite fast. She works for UCSF and  has been dealing with pleva/plc for 25 years. She is a pediatric derm and has had only 1 case of someone who did have tcell lymphoma. She did mention that the patient who did have it, had a really, really bad case that never went away or let up at all. It is pretty scary. I would be very interested in hearing what you have read on that.

I too look for triggers and think about that as well. Especially with young children who are just building their immune systems. She has had about 3 colds since her initial outbreak and so far so good. I get a little anxious when she is sick and being in preschool ugh!
Title: Re: Pityriasis Lichenoides Chronica
Post by: jpco on Tuesday December 16, 2008, 08:41:36 PM
I was curious on what the effects of Cannabis are on P.L.E.V.A. I am aware of the health effects of smoking marijuana, but I am just wondering if it has any positive or negative effects that appear strictly to users with P.L.E.V.A.
Title: Re: Pityriasis Lichenoides Chronica
Post by: Looknhelp on Thursday January 22, 2009, 03:54:18 AM
Hey Emmamae (and everyone!),
  I haven't been on here in a little while.  I first found this site when my husband was diagnosed with PLEVA in Sept.  He was told it was everything from bugbites to possibly MRSA.  The family practice docs got it wrong (which I now know is common), but a local derm. told us about Mucha Habermann disease (basically another form of PLEVA, just on other side of spectrum).  My husband was biopsied and had those results transferred to a hospital in a bigger city near us.  The first derm warned my husband that some doctors' theories say that this break-out can indicate types of cancer.  When we got the results at the hospital, from a doctor that had a little more experience in PLEVA/PLC, he told us that those biopsies would indicate cancer if it was present.  He said it was not.   He also said that this usually clears up on its own, but did give my husband tetrycycline to take.  My husband has been on this since then, with a couple weeks break after the first bottle.  We didn't believe it was too healthy to stay on antibiotics for a very extended amount of time.  He began to clear up after a couple of weeks on the antibiotic.  I must also state that we tried everything that I have heard from the hours of research I have done here and on other sites.  These are all that we did....my husband changed his diet (cut out wheat products, which is in practically everything you eat...we stuck to lean meats and veggies mostly for a couple of weeks).  He did a detox that we got from a drugstore (I was told by a PA to make sure he got a detox system that was pharmaceutical quality, otherwise if you get one from the shelf at Walmart or somewhere, they are full of fillers like sawdust!!).  He also stopped smoking.  That was a HUGE effort for him, but he did it!  He went once to the tanning bed, for about 3 or 4 minutes.  We did all of these things around the same time, and included prayer (all that we could get!).  So it's hard to say exactly what cleared him...I tend to think prayer helped the most!  He has been clear for a while now, but he just developed a bump about a week ago, on his arm that we are watching.  He said it could be the same thing...but I must say, other than the smoking, he is back to the same routines.... only did the diet and detox thing for about 2 weeks.  So, that's the info I have.  Hope it helps someone.  I don't know about the things we tried, but I think it is worth a shot.  We are getting back to praying hard for the recent bump...guess we'll see.

God Bless,
April
Title: Re: Pityriasis Lichenoides Chronica
Post by: pokeypup on Thursday January 22, 2009, 09:06:53 AM
Hi everyone. My name is Mary and I've had PLC for 2years now. Was on MTX (methotrexate) for a year and a half, which worked, but I hated the side effects and was scared for my liver.  I have since started phototherapy 3x/wk per my derm's reccomendation.  I've had 10 treatments so far and I think I might see some results ???  But the problem is, I am soooo itchy.  My PLC was NEVER itchy before, but since i've started phototherapy, my body is so itchy. Was wondering if anyone here has had success with phototherapy. I need some hope please. My PLC has spread to my face   :(  I am so depressed and I am even thinking of going back on MTX and learning to live with the side effects....HELP!!!

Depressed and Frustrated in Seattle,

Mary  :'(
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Friday January 23, 2009, 02:24:57 PM
Looknhelp: PLEVA/PLC comes and goes. You've tried a lot of things. It's good that your husband stopped smoking, but that would have no effect on his PLEVA/PLC. As for diet, diet and "cleansing" (I assume you mean laxatives) don't have any effect. Long term tetracycline therapy is generally safe, but may not be effective. The data are not conclusive.  UV exposure is clinically demonstrated to work, but 3-4 minutes wouldn't have any effect. You have to get regular exposure to enough UV to actually tan you. I suspect your husband's outbreak just went into remission. If it comes back, he should head to the tanning salon.

Pokeypup: What kind of UV therapy are you doing? I had great success with phototherapy. The best is actual sunlight, but tanning beds are a good substitute in wintertime. Nothing else worked for me, but we didn't have MTX back then. As for the itchiness, I had that too. Sun tanning makes your spots itchy. It goes away when the spots go away. Have hope: UV treatment has an almost 100% remission rate in the few clinical trials they have done. Three weeks is short a time for results, so be patient. Or take a vacation in a sunny clime. You sound like you could use one.
Title: Re: Pityriasis Lichenoides Chronica
Post by: bhmars on Friday January 23, 2009, 04:14:53 PM
Looknhelp and pokeypup:
I have had PLC for almost 3 years now and the only thing that has worked for me is going to a tanning salon.  I go on a regular basis usually 2x's per week and I keep a base tan.  It works.  I would say I am 99% better!  I do have dry patches where there were spots but for the most part I am almost clear.  I started out going every other day to the tanning bed. Starting w/ 2 mins.  then increasing 2 mins each time until I had a good base.  ( I don't have any on my face so I usually keep my face covered but if you have it on your face I would only expose your face for 3-4 mins.)  I now go 2 times per week and I stay in the bed for 14 mins.  I know that everyone says tanning beds are terrible for you but my derm. recommended that I go.  Just don't get yourself burned because that can make the PLC worse!  Use lots of lotion too... it seems to help my dry patches.  Before tanning, I tried oral steroids, steroid creams, and many other topical creams nothing worked!  Tanning has been a blessing!  Just be sure to always go to your derm for regular skin cancer screenings. Good Luck
Title: Re: Pityriasis Lichenoides Chronica
Post by: Looknhelp on Saturday January 24, 2009, 03:38:21 AM
Well, my thoughts on the things that we have tried is that something out there is causing it...In the research I have done, I found a few similarites with psoriasis, though there were some definite differences.  This led me to a conversation with a coworker that suffers from psoriasis.  She has found in the years that she has suffered, that diet makes a huge difference in her skin, and how bad it gets.  When she cut out wheat products, she noticed a significant improvement (not complete healing).  So we tried some changes, and things did get better.  I'm sure there could be controversy over whether one thing or other works or does not, but I did not want to sit by and try nothing and watch my husband suffer the embarrassment of this disease.  We felt like if we made the changes, and nothing happened, then at least we had done what we could control...it remains to be seen what will happen from here on.  I have kept in contact with a woman that has had this disease for years, but waited several years to do anything about it.  She seems to think that if you catch it early enough, maybe it can be controlled.  Who knows...this is obviously something that we don't know much about, but there has to be something triggering it in those that suffer.  I feel it is important to list as much info on here, from how it began, to how we are treating it, to the lifestyle during suffering.  Maybe we can find a common trigger.
Title: Re: Pityriasis Lichenoides Chronica
Post by: pokeypup on Saturday January 24, 2009, 03:52:04 AM
Thanks everyone for all the support...it's so great to communicate with people who understand!  :) 

BLX42: I am currently doing the narrowband UV phototherapy at my derm's office.  I stand in a light box pretty much.  I've had 11 treatments so far.  I was on methotrexate prior to starting phototherapy, so my derm wanted to start me low on the phototherapy.  My last session was 2 min 52 secs.  I think I will be at 3 min next week.  How long did it take before you REALLY started seeing result from phototherapy?  I guess I am a little impatient, but I was told the PLC gets worse before it gets better.  When I was on MTX, I saw improvement in two days!!! 

I just want reassurance that what I am doing is worth it.  I am only 28 years old and have suffered with this since I was 26.  PLC has consumed 2 years of my life!!! :'(

My PLC has spread to my face and I have been exposing my face while doing the phototherapy.  However, now I have brown spots ALL over my cheeks, on my eyelids and in between my eyebrows.  Do these brown spots fade anyone?  Need some hope please.  I am trying so hard to be strong...   :'(  but it is such a hard disorder to cope with.  ANY input would be greatly appreciated.

Yours Truly,
Mary
Title: Re: Pityriasis Lichenoides Chronica
Post by: pokeypup on Saturday January 24, 2009, 03:59:41 AM
Sorry...one last question to add to my last post. 

I am doing the UVB narrowband phototherapy at my derm's office.  It's a stand up light box.  Is there a big difference between this type and a regular salon tanning booth?? 

Thanks, Mary
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Saturday January 24, 2009, 08:27:02 AM
Dear Mary,

There is a huge difference in the light box used at your derms office and the stand-up booth at the tanning salon. The light box at your derm's office is very expensive to use and can be specifically set to the exact specification of light that the derm has 'prescribed,' such as narrow-band uvb.

I was driving 80 miles round trip 3 times a week and paying a $20 copay each time to use the derms light box. Considering the cost of gasoline and the copay, i was going broke trying to keep my PLC in check. I (along with the rest of America) was concerned about the cost of my treatment and mentioned this to the nurse who prepared the light box room for me.

The nurse told me to ask the derm about using a tanning booth. My derm told me that using a tanning booth was completely acceptable if I went every day and slowly worked my way up to 5 minutes a day and stayed no longer in the booth than 5 minutes. She advised against using a tanning bed as you could never be sure what kind of germs you might be laying on/in.

This was great! It only cost $25 month to join the tanning club for unlimited use per month! Since it was just down the street, there was no exorbitant gasoline costs! I carried a tube of Chlorox Cleanups with me to clean the floor of the booth and stood on towels (provided by the tanning club) to be sure I didn't pick up other's germs. I started out with 3 minutes for a week, then went to 4 minutes a week and finally 5 minutes a week. I stayed at 5 minutes a week for as long as I continued to go. If I had to stop going (I have MS and some of my meds caused sensitivity to sunlight), I had to start over again at 2 minutes and work my way up to 5 minutes again. Though I tan easily, I never went past 5 minutes a day. I had complete success using the tanning booth. It was important to use a tanning booth cream to keep my skin from drying out while tanning. During the summer I would just lay out on my patio for the same amount of time, then put on 45 SPF sunscreen and stay under the gazebo, umbrella or shade of the tree or house.

It is so very important never to burn using the tanning booth or using real sunlight. I think the worse I ever felt was the one time I had burned myself without knowing. Complete misery beyond belief! Not only was my PLC brought under control, it also helped my SAD, a disorder I suffer from the lack of sunlight in the winter months.

Remember that you still get sunlight on cloudy days and when you are in the shade when sitting on a patio (sunlight bounces off the concrete). Last year my husband got me a large umbrella that easily rolls around the yard so I can work in my gardens and still be in the shade.

I also discovered that acrylic nails are very thick and cannot break the skin when you scratch. Many is the time when I've awakened in the night tearing at my skin because of the itch. Having acrylic nails now keeps me from scratching my skin open. There are also bathing gloves sold (usually found in the same place as the tulle bathing puffs) that are made from a scratchy material that I have worn to bed because I can rub my legs with them and it feels great, but I'm not scratching the skin open.

I am curious to see what is going to happen in the next few months. I was diagnosed with breast cancer (as if having MS and PLC isn't enough) and had a Mastectomy weeks before Christmas. Because I had two tumors in one breast over the size of 1cm, the preventive measure of 6 months of chemotherapy is recommended to assure all cancer cells have been destroyed. If only one cancer cell escapes detection. cancer can form elsewhere in my body. So, I will let everyone know what effect the chemotherapy has on my PLC.

I have had PLC for 4 years now, it never goes away, but has limited itself to my legs for the most part. The 'cycle' of PLC - from papule through to a type of psoriasis, patches of cycles are happening all over. At the age of 53 I had hoped it would have been done by now. I have to inject an interferon cocktail for the MS every week and take many other medications due to side effects and exacerbations of the MS and don't know if that has prolonged the life of the PLC.

I hope this has answered your question Mary (and then some). Please don't hesitate to contact me with any other questions. Good luck and have a blessed weekend!

Elseaeff  :o
Title: Re: Pityriasis Lichenoides Chronica
Post by: pokeypup on Sunday January 25, 2009, 02:19:51 AM
Dear Elseaff,

Thank you so much for your response.  Luckily, I live in the city and less than ten minutes away from my derm's office.  I also don't have to pay a copay with each session.  I just have to meet a maximum deductible of $150.00 for the year.  My insurance is really good about this whole disorder...the only one thing that is going right!!! 

Curious though....when you say there is a huge difference between a tanning booth and phototherapy at the derm's office, would you say it's better to go the derm's office and do phototherapy? 

Did it also leave you with brown spots? If so, how long do they take to fade?  I've had clear, flawless skin on my face my entire life...RARELY did I ever even get a pimple!  (I am absolutely humbled now!!)  My PLC spread to my face, primarily my eyelids and I have been exposing phototherapy to my face...except my eyelids as I need to cover them with goggles.  So, with the phototherapy, it's left brown spots on my cheeks, which actually looks exactly like acne minus the bumps and redness.  I just need reassurance that this will at least fade, even A LITTLE.   

Pls keep us updated on how chemotherapy goes with your PLC.  I think methotrexate is a type of chemotherapy, which worked for me at one point, so I wonder if it will at least rid you of your PLC. 

I am so sorry you have so many obstacles to overcome.  I'm so glad to be in touch with you and I will certainly keep you in my prayers.

God Bless, Mary
Title: Re: Pityriasis Lichenoides Chronica
Post by: amy1194 on Wednesday January 28, 2009, 03:51:16 PM
 :'(
Title: Re: Pityriasis Lichenoides Chronica
Post by: amy1194 on Wednesday January 28, 2009, 03:56:29 PM
3 days ago i got diagnosed with pleva, after a skin biopsy. I am 34 years old.
i ve read everything everybody posted in this site and i am so
dissapointed, you have no idea.
i have an appointment with my dermatologist today to figure out
how we are going to fight it.
you people mention about erythromicin, tetracyclin, doxycline, z pack,
how do i know which one is going to work?
I can not believe that there is no cure for that? how can this be?
how is it that scientists can cure cancer, they can cure all kinds of stuff but
they can not cure this freaking skin disease?!
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Wednesday January 28, 2009, 04:25:39 PM
Hello there!

It's not that they can not cure this disease, there just aren't enough of us with it for the pharmaceudical companies to make a profit on making something to cure it. Once they go through research & development, then the requirements of the FDA, the will lose money on the very little amount of people who suffer from this quirky disease than of others. I also suffer from Multiplse schlerosis. There was no treatment or medication for that disease until the mid '90s and more than half a million people across the US alone suffer from it. There are no where near that amount of people who suffer from Pleva and/or PLC.

Unfortunately we are caught by bureaucratic red tape. The can't make money off of us, so they don't make the meds to help us.

Regards,
Elseaeff
Title: Re: Pityriasis Lichenoides Chronica
Post by: emmamae on Thursday January 29, 2009, 12:56:05 AM
Hi Amy1194, Yes there is no cure and everyone responds different to pleva. I personally think that the sooner the diagnosis, the sooner you can try to fight it. My daughter was diagnosed within two weeks of having it. She only had it for 6 weeks. I still don't know for sure if it will never come back or if she is just in remission.( She hasn't had any spots or anything for 4 months now)  Her derm said "it has left her body". I think her case is unusual. We did zpac (which is azithromycin) she did 2 rounds of this, you take it  for 6 days and it stays in your system for 2 weeks. She was also prescribed a topical steroid cream. I put it on her back and I swear overnight her spots seemed to fade from that cream. Now, to this day, I don't know for sure if the cream or antibiotics worked or if the pleva just left her body. ( They think it may be an auto immune disorder and she had some weird virus and her body didn't respond right and when the virus left etc, the pleva does too). Her derm said stuff like, her immune system must have just kicked this out. I asked her, does she know if it was the meds or just how long it lasted on her body and she didn't know. My daughter is only 4, I also heard that in children, it does suddenly just go away sooner than in adults.  The one thing that her derm told us and that EVERYONE seems to agree on, is the sun. Get as much as you can. She told me to have my daughter run around naked in the back yard in the sun everyday for at least 10 min unprotected. I'm sorry I don't have any better news for you. It does go away in some people and for most people, the initial outbreak is the worst and then it seems to come back a little less. Also, I think stress can also be bad for it. I know how upset you must be feeling, I was devastated. It is scary and especially that they don't know much about it.
Title: Re: Pityriasis Lichenoides Chronica
Post by: pokeypup on Thursday January 29, 2009, 09:01:38 AM
3 days ago i got diagnosed with pleva, after a skin biopsy. I am 34 years old.
i ve read everything everybody posted in this site and i am so
dissapointed, you have no idea.
i have an appointment with my dermatologist today to figure out
how we are going to fight it.
you people mention about erythromicin, tetracyclin, doxycline, z pack,
how do i know which one is going to work?
I can not believe that there is no cure for that? how can this be?
how is it that scientists can cure cancer, they can cure all kinds of stuff but
they can not cure this freaking skin disease?!

I am so sorry to hear of your diagnosis.  Just wanted to let you know you are not alone. :)
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Thursday January 29, 2009, 04:14:08 PM
Dear Amy,

You are not alone in your dismay at not having a cure for this disorder. I am 52, and on top of having PLC, have MS, Fibromyalgia, chronic depression, panic disorder, and and cancer. I think there is a target painted on me somewhere...

As I earlier pointed out, it all comes down to the almighty dollar. There aren't enough of us with PLC/Pleva to make it worth the time of a pharmaceutical company to spend the money to bring a drug to market, so why bother? This site covers many countries, so I know there is no cure in other countries, either.

Sunlight seems to be the best cure, but everyone seems to have a different number for the time of sunlight permitted. Perhaps it's because they live in different areas of the country. 10 minutes of Mi sun is comparable to 5 min of Richmond sunlight.

I must take many drugs due to my many maladies and several have a sensitivity to sunlight. So, I use a steroid cream and my own 'therapy' developed after nearly 4 years of having PLC.

It is exasperating and seemingly unfair that we must go without any kind of medication at all. But then, more than 400,000 people suffer from MS in the US alone and there was no treatment or medication available for this crazy illness until the mid-'90s! Go figure. The medication for MS costs more than $1.000 a month and though there's some help for it, it doesn't look like that will change for awhile.

There are many good ideas on this post. All I can do is to tell you NEVER allow yourself to get sunburned (ouch to the 10th degree), never take a hot shower (no matter how tempting it is) and always keep your skin moisturized. Don't break the skin if scratching and try not to scratch. All of the tubes of anti-itch meds that your derm will prescribe I have found to be too thick and tend to clog your pores, making the itch worse. Do not use any of the oatmeal bath products to stop the itch, it will dry out your skin.

I usually take a warm shower and, before drying off, rub in a generous amount of baby oil gel. This keeps the moisture in my skin as long as is possible. After I've rubbed the gel in thoroughly, then I finish drying off and lightly dry off the remaining oil that hasn't soaked into my skin. I use a very light lotion during the rest of the day and night, Original Eucerin Body Lotion and right before putting my pajamas on I put a thin coat of lavender oil (found at The Body Shop in person or on line) that is very light and uses carrier oils such as flax and grapeseed oil, etc.). It usually soaks into my pajamas as well as myself, but it keeps my skin moisturized and doesn't itch very much at all.

When I itch vary badly, I use a 0.05% Fluocinonide Cream, a steroid cream (I tried many before I found this one - not the oil, the cream) and when I take my pain medicine for the Cancer, it will make me itch and I take Hydroxyzine HCL, an antihistamine that aids in my itch (and makes you sleepy).

Best of all is that I get my nails done with acrylic, which is much thicker than your own nails. It is impossible to scratch your skin open with acrylic nails!

Men, have no fear, you need not get acrylic nails. You can get the bath gloves that are sold in the same area of the store as are the tulle bathing puffs. They look like regular gloves, but if you feel them, they are scratchy and are meant for exfoiliation. They will feel wonderful being rubbed on your itch, and will not break the skin.

Soaking in a bath of bath salts to exfoiliate the dry skin, followed by oil to replace the dry skin is a treat.

Other than that, I can sit under my gazebo and get just enough sun to help my skin and not burn or cause trouble with my medicines.

Hope this helped a little. I've got an email into my derm asking what the chemo will or will not do to my PLC. just curious.

Take care, good luck. Have a blessed week and weekend!

Elseaeff
Title: Re: Pityriasis Lichenoides Chronica
Post by: BLX42 on Thursday January 29, 2009, 04:46:07 PM
3 days ago i got diagnosed with pleva, after a skin biopsy. I am 34 years old.
i ve read everything everybody posted in this site and i am so
dissapointed, you have no idea.
i have an appointment with my dermatologist today to figure out
how we are going to fight it.
you people mention about erythromicin, tetracyclin, doxycline, z pack,
how do i know which one is going to work?
I can not believe that there is no cure for that? how can this be?
how is it that scientists can cure cancer, they can cure all kinds of stuff but
they can not cure this freaking skin disease?!

The most effective treatment is sunlight. In the few clinical trials it igreatly mproved or completely cleared virtually 100% of the patients. It's not a cure, but it gets rid of the symptoms. So cheer up. There are worse things in life than having a nice tan all the time. The derm that finally treated mine effectively recommended an ordinary tanning salon. Cheap. Effective. It is a first line treatment for the disease.

As for antibiotics, there is a temptation to treat everything with a pill or a cream these days, but these do not have a very good clinical record. They may seem to work, but since the disease comes and goes, that seeming effectiveness may be an illusion. MTX (methotrexate) apparently does work (see above) if you're willing to put up with real side effects.

Whether drug companies are interested or not is irrelevant. They haven't been able to cure the common cold either, and that would be a real money-maker. PLEVA/PLC is very rare, which means most derms have only seen a case or two, and clinical trails are difficult.
Title: Re: Pityriasis Lichenoides Chronica
Post by: PLC girl on Saturday February 07, 2009, 11:46:54 PM
I had my first outbreak in 1991 and it lasted 5 years until i was acutely ill and hospitalized with ischemic colitis, when the rash completely left and did not return until last month. It's biopsied as PLC again, but this time very pruritic on my neck. I'm going to start tanning again, I'm taking bromelain capsules, and i just started 6 weeks of doryx. I became gluten intolerant last year and was wondering if anyone else is gluten intolerant, too?
Title: Re: Pityriasis Lichenoides Chronica
Post by: tnczeller on Sunday February 08, 2009, 11:34:57 PM
My 9 year old daughter was diagnosed with PLEVA on Friday after having a biopsy done of a rash she has had for over a month. I am kind of freaking out here. I read sites that say it is an immune disease, can anyone tell me what this means? She has been treated with steroids, which also freaks me out. I have changed her cleanser to cetaphil and oatmeal, hoping to reduce the inflammation of the rash. I have also increased her fluid intake and I am now controlling what she eats, like less sugars and pop, stuff like that. I homeschool so I am grateful that she don't have to go through teasing from other kids. She is covered from head to toe and breaks out more every day. If we put steroids on the spots one day, she has more the next. I am afraid of the long term effect of antibiotics such as erythromycin and tetracycline. Do I need to keep her away from germs? Will that effect her break outs? I mean if she get sick, she has always been kind of sick, will she break out more? I am confused as well on how she may have gotten it. Some sites say it is brought on by agents like strep or staph, she has had strep throat WAY too many times. She got her tonsils out last May and has had strep two times since. She is miserable with itch and pain and she is embarrassed. I am really just wanting to stay up to date on any new developments. My husbands says don't stress but she is my baby and it hurts me to know what she is going to go through, any encouragement is greatly appreciated...
Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Thursday February 12, 2009, 12:44:41 AM
PLC Girl where are you? Email me at [email address removed]. I have been trying to reach you.
Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Thursday February 12, 2009, 11:55:39 PM
I HAVE noticed I get very itchy:
(a) after eating wheat products
(b) prior to my period
(c) when sleeping - esp when the heater is on

I have tried several antibiotics and it has not cleared. I got an infected ingrown toenail and the doc put me on Keflex and my skin did not clear. It gets much better with natural sunlight and the tanning bed helps. My skin gets dry so I moisturize and moisturize but I still wakeup itching in the night. I take a Zyrtec every evening and it helps some. I cannot do Benadryl because I am a zombie the next day. It's been over 6 years and my bumps have changed. Not really blistery any more...they are bumpy, get whitish on top and hard dry skin. When that pops...it's a like a round pleva circle underneath. It is SO annoying!!
Title: Re: Pityriasis Lichenoides Chronica
Post by: Pleavstinks on Friday February 13, 2009, 11:29:55 PM
tnczeller, hang in there.  Our 8 yr son was diagnosed with Pleva in Oct.  he was at one time covered from eyelids to toes.  The sun is supposed to help, but he broke out while on Vacation in Fl.  On Wed. a rash started on the back of his neck, and we thought it was sun poisioning.  When we got home on Sat. he got out of the shower and I could not believe it.  It looked like he was wearing spotted swimming trunks.  Any place that had not been exposed to the sun was covered.  By Monday morning they were moving up his stomach and down his legs.  We went to the Dr. Monday and Tues.  they did not know and sent us to a dermatologist.  She said it was Pityariasis Rosea.  It kept getting worse, we took him back and they did a biopsy that came back PLEVA.  He was on the erythromycin for 2 months.  Not sure if it helped or not. Our derm. did a full blood work up, that came back good.  We worry about t-cell lymphoma. He is spot free at this time.  I understand how you feel, I worry if he gets a cold he will break out all over.  We did get to see a full range of spots.  He had what we called pinpoint ones that seemed to come and go if he ran around and got hot.  The angry ones people have described, and what we call the "barnicles" on his elbows and knees, they were white and hard, just wanted to sand them off.  He has a great attitude, when people ask what the spots are, he tells them, its not chicken pox, I'm not contagious, don't worry my t-cells won't hurt you they only attack my skin.  Sorry to ramble, I have never posted before.  Best of luck to you and your family. 
Title: Re: Pityriasis Lichenoides Chronica
Post by: tnczeller on Thursday February 19, 2009, 03:59:58 PM
Thanks so much! The saga gets worse... they did a biopsy and confirmed it is PLEVA. The derm said she is sure it is PLEVA but sends all biopsies out for a second opinion, so she did that. The second derm said it looked like a reaction to a bug bite. I understand that a bug bite can cause hives... this is not hives. This is very much little red bumps with heads, they resemble chicken pox. I have never even heard of a bug bite causing hives for what is now going on 2 full months. I want to know how the derm who saw her and the bumps and her ped can be overruled by a derm that has never even seen her? A bug bite does not fit. Not to mention that they went away for a couple days, when we controlled her diet and what she had exposure to, and now she is covered again. If it was a bug bite, why would it go away and then come back? Her derm told us up front that PLEVA is often diagnosed as chicken pox or a bug bite. I don't know where to turn now. Her ped said it don't make sense for her to have a bite that has a reaction for this long. She is going to do some of her own research on PLEVA and is going to treat her.
Title: Re: Pityriasis Lichenoides Chronica
Post by: janjan on Monday February 23, 2009, 06:24:41 PM
Jahan,

We have a lot in common. my daughter is 9 and was just diagnosed with pityriasis.  I feel so bad for her because some of her friends have noticed the ones on her hands and face.  They have pointed them out to her and asked, "What are those?"  Nothing has worked for her, creams, antibiotic etc...  I feel that ubv light therapy is our next step.  Also, now that Summer time is coming, we need to get them out in the natural sunlight.  I've heard many people say that in the Summer, it gets a lot better.  She has had it now for about 5 months.
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Monday March 02, 2009, 07:41:16 PM
Hi JanJan

Sorry to hear about your daughter.  Mine has had it since she was 2, and she will be 11 this summer.  They told us it would take 5-10 years to clear, probably closer to 10.  Still waiting..

Hope she's alright.  Have your docs given you a length of time range, etc..?

J
Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Tuesday March 03, 2009, 11:04:53 PM
What made or makes the doctors think it will take 10 years? Where did that figure come from?
Very curious!!
Thanks, Linda
Title: Re: Pityriasis Lichenoides Chronica
Post by: princesslaura on Wednesday March 04, 2009, 05:29:53 PM
Hey

I'm 17 and i live in England and i've got PLC, i've had it for about 5 or 6 years now and to begin with it was terrible but then started to settle down a bit but now its started to come up really bad and its coming up on my face which it never has before. I used to have regular dermatologist appointments to monitor it and had phototherapy for a while but it didn't really do much just made me burn so me and my mum decided it was probably better to leave that. All the doctors give me is hydrocortisone cream which doesn't seem to do anything for me. I'm no longer under the care of the hospital here as they said my case wasn't severe enough but when i go to the docotrs they don't even know what PLC is, so does anyone know anything that can make it look less severe or just make it go away from my face . . .  i hate having to explain it to people cause they just don't get it!

Thank you!  :)
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Wednesday March 04, 2009, 05:48:49 PM
What made or makes the doctors think it will take 10 years? Where did that figure come from?
Very curious!!
Thanks, Linda

I am 53 years old now, diagnosed with PLC at 49. All research I did at that time showed that PLC usually affects the young and will dissapate with puberty. Obviously that was a bunch of BS. Excuse my French. I don't know why doctors give you dates for how long you or your children will have PLC or Pleva, because it comes when it wants, it goes when it wants and they don't know what starts or stops it. They doctors aren't even sure how to treat it properly.

-I have learned to never allow your skin to dry out. Always keep it moisturized.
-Cut down on showers and baths unless absolutely necessary. When bathing, before drying, I cover my body with a baby lotion GEL and rub it into my wet skin well. Then I dry and put on clothing (preferably long so my furniture doesn't pick up the gel).
-I have found that all prescription itch medications given to me by the derm have been too heavy and make the itch worse. A light, water-based lotion works best, applied often. Uceren's Original Body Lotion isn't all that sweet smelling, but it's light and doesn't clog the pores, allowing for air to circulate and the itch to calm.
-NEVER NEVER NEVER get a sunburn. Get the recommended sunlight from your derm then put the highest sunscreen on that you can find. Being sunburned with PLC or PLeva is the worst feeling in the world.
-I use the bathing gloves rather than a wash cloth or scrunchy to bathe because the feel wonderful, they ex-foliate the skin and can be washed like regular bathcloths. I love to take a bath 0occasionally where I use lavender sea salts and those gloves to exfoliate the dry skin (which causes terrible itching) then use a lavender oil, rubbing it into my skin and soaking in it as long as my MS can stand the heat of the water.
- Never use hot water in a bath or shower. It dries the skin out. It feels wonderful, but you'll pay later.
- Sunlight is the best medicine for this problem. My derm recommends no more than 5 minutes a day. After that I put on the highest SPF sunscreen I can find and try to keep out of the sun as much as possible. too much is worse than none at all.
- the oral tetracydes can, over time, do damage to teeth and such for children. I will use topical tetricides for my itch.
-My PLC NEVER goes away. I am always in some sort of morph somewhere on my body. It begins in papules, and morphs into something like psoriasis and ends with a brown flaky spot that sometimes can be scraped off with my nail. There is always somewhere on my body in one mode or another of PLC.
-I ignore dates and lengths of time given for the PLC or PLEVA to run it's course. No one can be sure. You're looking for empty security.

I have a million other things that I had to find out on my own over the last 4 years of having it. I do have a compromised immune system. I have MS. You would be surprised to learn the many different disorders you have in your life are the result of a compromised immune system that you never even knew you had. Don't freak out over it. Don't freak out over materials you may read about a lymphoma associated with some types of PLC and/or PLEVA. They are so rare that my doctor has never seen any in the dozen years she's been working with this and she's been named #1 derm in Richmond for more than 7 years.

Do not be afraid or show fear, your children pick up on that right away. As an adult, don't be afraid. It's not a life threatening condition, though it can be (if you are that kind of person) embarrassing because of the spots. At this point in my life I just don't care.

Feel free to contact me with any questions or concerns. Please note, I have little information on children, mine are grown and I was 49 when I was diagnosed. I'm sure many of my routines and treatments would work for children, but I am more familiar with adults.

Regards,
elseaeff
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Wednesday March 04, 2009, 06:09:57 PM
The ten years was just from my old pediatric dermatologist in Boston.  We moved away, but he told me about 10 years just based on his experience of dealing with PLC/PLEVA for 25 years. 
Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Friday March 06, 2009, 05:22:51 AM
Princesslaura:  I use Vitamin E oil and Protopic on the bumps on my face. I put it on before I go to bed and use cover up in the morning. I get a few around the nasal area, two on my brows and a few near my chin. I also found that Lacome toner seems to help after I wash my face. Try to get a little sun on your face too.
Title: Re: Pityriasis Lichenoides Chronica
Post by: spicedmoxie on Friday March 06, 2009, 03:51:10 PM
Has anyone tried bromelain? I found this study:
http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17671882&log$=activity

-- Showing bromelain working with 8 people.

I got PLC about 11 years ago, never had PLEVA. Have spots all winter and it disappears in the summer - it only takes a little sun daily to keep it at bay. But it does have to be every day: I've been thinking of getting a lightbox, because I just can't get enough tanning time in my schedule (mom of two small boys).

I don't tan or burn easily, and I wonder if our skin's reaction changes the "sun dose" we need. The night before a breakout I'm not itchy but I do have insomnia - itchy comes after the breakout.

Anyway, if bromelain works, I'm going to be all over that, because it'll just be easier. I'm so tired of these spots! The problem is that I go through outbreaks all winter, getting worse as the light fades, so I'll have to just keep taking it all winter - after an outbreak, it's sort of a done deal, and they just have to heal.
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Friday March 06, 2009, 06:22:57 PM
Hi SpicedMoxie, I am familiar w/ the bromelaine.  I was really excited to see it, but hy spouse is skeptical/nervous about issuing bromelain to my daughter (she is 10).  W/ puberty starting, etc..  We agreed that if she is still dealing with this at say, 16, we'll give the bromelain a chance.  I'd love to hear if you have any success with it.  Please keep us posted!!  It looked like an exciting study.  But after so many years, I don't want to get my hopes up too much.  I can relate to what you are saying..  My daughter has had it for eight years , since she was 2.  Even in summer she is not completely spot free, but there is a big improvement.  Our winter experiences are similar to yours. 

J
Title: Re: Pityriasis Lichenoides Chronica
Post by: emmamae on Friday March 06, 2009, 10:22:28 PM
Hi J, I was just wondering if you noticed any difference in your daughters plc during vaccine time? Or if your doctors had any input as to how to handle vaccines when she has an outbreak etc? My daughter has not had any spots for sometime now and she is due for her boosters for kindergarten and I am curious if this will affect her pleva. I have not had any luck finding much information as most people  on this board tend to have gotten this when they were older or when there kids were past the vaccine ages. Any input on the subject would be helpful.
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Monday March 09, 2009, 01:19:07 PM
Hello Emmamae,

I am personally not too concerned about the standard vaccines.  My daughter developed PLC when she was exactly 21 months old.  She had not been to the doc since her 18 mo. checkup.  She had last received vaccines at 12 mo.  It took a couple of months to get diagnosed (at 23 mo.).  I took her to the doc at 24 mo. for her 2 year checkup.  She did receive a couple of vaccines.  It made no difference to her PLC. 

That being said, there is that new vaccine out for HPV.  They are targeting young teenage girls.  My daughter is only 10, but I know her ped. will bring it up in the next year or two.  I will not vaccinate her for it.  First, it only protects her against a few strains of the virus.  Second, I get a little worried about "new vaccines".  Third, there was a scary thing going on in the news.  A girl who had suffered PLC for a few years was given this vaccine.  She had a terrible reaction and is apparently sick in the hospital and not expected to make it.  Maybe having PLC had nothing to do w/ it, but the lawyers/parents of the girl were saying to the drug company that w/ the new vaccine, they should give warnings to people who have "immune based issues".  Every vaccine has its risk.  I am for vaccines that have been around a long time.  But not this new one.  Therefore, I will never vaccinate my daughter for this.  If you are interested in reading more about this, you can do an online search, but it is in litigation now, while the girl lies dying.  Really tragic.  Hope that helps.

J
Title: Re: Pityriasis Lichenoides Chronica
Post by: princesslaura on Monday March 09, 2009, 02:11:04 PM
I've recieved the HPV virus at school, and i had no reaction to it at all, i've had PLC for a few years but i didn't notice any difference just a slightly soar arm but thats completly normal, i've not the last one next month as they do it in three doses, my mum had to give it a lot of thought but she decided the the pros outweight the cons
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Tuesday March 10, 2009, 12:52:52 PM
Hey PrincessLaura,

What country do you live?  Do you try to get a little sun on the PLC in the summer?  Good to know about Gardasil/HPV.  I thought about that girl w/ PLC and the vaccine.  All vaccines, esp. new carry a small risk.  It was probably coincidental that the girl had such a tragic reaction, maybe not related to PLC.  But you never know. 

My daughter is going to be entering the teenage years soon.  How do you deal w/ it being a teenager?  Are your friends cool about it?  I just wonder what to expect.  In some ways, since she's never known any different, it might be "easier"; but in other ways, so many years is so long to wait.  It is never "easy" for anyone, esp. where it is so rare.  Not like you meet too many teenagers/kids w/ PLC/PLEVA.  (My daughter gets a smattering of PLC around her chin.  She also has chronically dry skin, and her face gets a little eczema-ish, which can make little reddish bumps too.  Plain vaseline works best for her.  She hasn't hit that greasy acne stage yet.  Does your PLC make you chronically dry, or is it better because you are a teenager and therefore produce more natural oils?   J 

Title: Re: Pityriasis Lichenoides Chronica
Post by: princesslaura on Tuesday March 10, 2009, 07:17:46 PM
Heya J

I live in England, so as you can imagine we don't really get that much sun, but i do notice that when i go on holiday my PLC does get a little better eapecially on my face, i have to be careful though as i am really fair skinned so burn easily. I only got PLC when i was 12 and at that point it was terrible, very noticeable on my arms, body and legs. I couldn't do aports at school for about 4 months because everytime i moved too fast the soars would split open and bleed on my kit. After a couple of visits to my dermatologist they decided to give me phototherapy three times a week, i did this for about 10 weeks and then stopped as it made me burn and the PLC around my eyes became really bad, i looked as if i'd been crying for days. When i was 14 and moved to my upper school my skin slowly started to calm down. I'm now approaching my 18th birthday and its pretty good i've got used to it, its always there but flares up now and again when i get stressed or if i get too hot or too cold.

My friends have been amazing about it, they all say to me they don't notice anything, but i know their only saying it to make me feel better. The only rather annoying thing that i have encountered is whenever i have to explain my condition to anyone they assume that its ezxcema . . . i find it most annoying.

I get some patches dry skin, especially around my mouth where i currently have a patch of PLC, but i use E45 cream three times a day and i try to drink plenty of water to keep my skin hydrated. I also found aloe vera cream works quite well at soothing the PLC patches, it stops the itching. I never had much problem with spots but i will say stay away from things like clearasil or spot creams they just dry out the skin even more. I was given hydrocortisone cream for use on my eyelids where i get PLC particularly badly but i try to avoid using it as i was warned it would thin my skin. Recently my skins been getting worse as i've been getting more stressed with my upcoming A level exams, as i have to do well in them to get in to university and i have no idea what to use to try and get my skin a bit better, i was thinking of going to use sunbeds but i'm not too sure about that?

Laura x x
Title: Re: Pityriasis Lichenoides Chronica
Post by: emmamae on Wednesday March 11, 2009, 12:20:49 AM
Hi J and PrincessLaura, thank you for sharing your experience with vaccines. I did look up the Gardasil/hpv vaccine  on the net and there were several complications with this vaccine, I only found one story of a gilr who lives in Northen California who also has plc and is now paralyized after the vaccine (not sure if there is a connection.)  I wasnt sure if this was the same girl you were speaking of J? My daughters derm says to go ahead but to not do more than 2 vaccines at a time and wait at least a year for anymore. I really hate all of this and worry to much. She is also going in for a second round of testing for allergies which we had to choose a blood draw vs. patch testing. Ugh.

Title: Re: Pityriasis Lichenoides Chronica
Post by: galpal on Sunday March 15, 2009, 02:03:54 PM
Hi Everyone,
Thanks to someone for posting the info about bromelain.  I happen to be bringing my daughter for her annual derm appointment this week so I found the full report on bromelain.  I couldn't link it because it was a pdf and I don't know how.  The pictures in the full article are amazing.  The skin was completely cleared and gorgeous.  I didn't know what bromelain was so in case you don't either here is a description from the article:

[
b]Bromelain is a complex natural mixture of
proteolytic enzymes that is derived from pineapple
stems (6). Beneficial effects of bromelain were
suggested or proven in a variety of inflammatory
diseases and models of inflammation. These include
immunologically mediated arteriosclerosis in rat
aortic allografts (17), the experimental allergic
encephalomyelitis (EAE) model for the human
autoimmune disease multiple sclerosis (18), IgEmediated
perennial allergic rhinitis (19), and collagen-
induced arthritis in the rat (20). In some
studies anti-inflammatory activity of bromelain was
compared to steroids and NSAIDS. A dose of
10 mg/kg iv bromelain showed activity similar to
0.3 mg/kg ip dexamethasone (equivalent to 20 mg
prednisone in a 70-kg human) in carrageenaninduced
pleurisy models in the rat (19,20).
Bromelain had efficacy similar to classic NSAIDs
in some rheumatologic studies in humans (21–25).
It is difficult to establish the mechanism of action
of bromelain in PLC. Both its anti-inflammatory and
immunomodulatory properties (which it has in
common with many other drugs used to treat
PLC, such as steroids and tetracyclin) are presumably
involved in the clinical response, as well as its
anti-viral activity. Indeed, several in vivo and in vitro
studies have demonstrated that bromelain induces a
reduction in levels of prostaglandin E2 and thromboxane
A2 by selective inhibition of proinflammatory
thromboxane generation and shifts the ratio of
thromboxane/prostacyclin (PGI2) in favour of the
anti-inflammatory prostacyclin (6). The immunomodulatory
activity of this drug, exploited as
adjuvant therapy in some anti-tumour treatment
protocols, also seems to be related to its inhibition of
T-cell signal transduction (6). Finally, the effect of
bromelain may also be related to its antiviral properties.
Indeed, recent studies have suggested that
parvovirus B19 may be implicated in PLC (2,4) and
bromelain has been shown to alter the parvovirus
envelope, giving rise to mutants with lower cell

citation:  Journal of Dermatological Treatment. 2007; 18: 219–222[/b]

RISULO MASSIMILIANO, RUBEGNI PIETRO, SBANO PAOLO, POGGIALI SARA &
FIMIANI MICHELE
Department of Clinical Medicine and Immunological Sciences – Section of Dermatology, University of Siena, Italy
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Monday March 16, 2009, 01:11:19 PM
Hi GalPal,

If it were my decision, my daughter would be on bromelain now, but my husband wants to wait for a while.  I will bring it up next time I see the doc.  Could you please let me know what your ped. derm says?  I always think doc's give us a funny look when we bring up herbs, etc..  but I read the study too, and it was done by what looks like a reputable medical university. 

Let me know if you try it!  (Is your daughter PLEVA or PLC?) Mine has PLC and she is 10.  She's had it since she was 2.

J
Title: Re: Pityriasis Lichenoides Chronica
Post by: 1huskermom on Saturday March 21, 2009, 02:58:27 AM
BROMELAIN 

My name is Mandi, and I have had PLC for just over 5 years now.  It came on when I got pregnant, and was diagnosed with a punch biopsy.  My derm. told me there was nothing I could do while I was pregnant and to come back after I had my son.  Well, I nursed him for a year, and then I got pregnant with my youngest and nursed him for a little over a year.  So, after 4 years of constant PLC with itching, I returned to my derm. and was told nothing would take it away, but that the sun was my best option.   I decided to research natural alternatives on the internet and found the study on Bromelain.  I decided to try taking the Bromelain and also something called Milk Thistle, which is a liver detoxifier.  I started taking 3 40mg. pills of Bromelain a day plus 2-4 milk thistle capsules.  After 2 months, I went down to 2 40mg. pills of Bromelain a day, plus 4-6 milk thistle capsules.  About 2 months after that, I went down to 1 40 mg. of Bromelain and 2-4 milk thistle a day.  I couldn't believe the difference in my skin after the first month, but after a couple of months, I had no more spots.  After 6 months, I thought I was cured for sure.  Then, I got pregnant again, and the whole thing started over.  Apparently hormonal changes are a huge trigger for my PLC.  Hormones and extreme temperatures.  Anyways, sadly, I lost that little boy, so now I am ready to start in on my Bromelain and Milk Thistle treatment.  If anyone has any questions feel free to ask.  I can't say that I will know the answers, but I have tried a lot of things that failed.  Bromelain and Milk Thistle have been the only things to work for me.  I hope this helps.
Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Saturday March 21, 2009, 08:00:13 PM
Hi Mandi:  Thanks for your input! I too came down with PLC due to hormones...stopped taking birth control pills. My internist is checking into the Bromelain right now. You had no side effects...upset stomach or anything? What made you add the Milk Thistle? The research I've done so far shows that one of the things that Bromelain does is help regulate hormone function...curious, huh? Were you completely clear and itch free? Residual scarring? I'd love your input...also where are you from? Thanks so much!!!
Title: Re: Pityriasis Lichenoides Chronica
Post by: 1huskermom on Monday March 23, 2009, 01:18:43 AM
No, I haven't had any side effects from the Bromelain.  I take the 40mg chewable form, and they sort of taste like smarties candies.  I am the kind of person who researches everything, and I hate to take medication.  So, while I was researching more natural ways to get rid of the PLC, I came across several articles on the benefits of Milk Thistle.  I would suggest you just google Milk Thistle benefits, or Milk Thistle and your skin, etc. and read all of the articles for yourself.  Basically, it cleans out your liver and helps protect it regenerate itself.  Your liver is like your bodies filter.  It traps all of the junk that is in our food and water, the air we breathe, and even what we put on our skin, like lotions and soaps.  There is so much out there that just isn't good for us to put into or onto our bodies.  It also has anti inflammatory properties, just like the Bromelain.  After several months of taking the Bromelain and Milk Thistle, I was completely spot free.  However, when I started to wean myself off, I started getting the "spots" again.  They weren't near as bad, and there weren't as many, though.  So, I just took did the cycle over again.  Since I am just starting the "treatment" again, I think this time I will start with the 3 Bromelain a day and when I get down to 1 a day, I will just stay there for a while.  The way I look at it, any relief is wonderful, so even if I have to continue taking the Bromelain and Milk Thistle it is quite worth it for me.  I should also tell you that since I tried the Bromelain and Milk thistle cocktail a year ago or so, even when I did get pregnant (which is a HUGE trigger) I was amazed at how managable it was.  Every flare up since then has been quite mild.  So, I am hopeful that another round of Bromelain and Milk Thistle will take this away for good.  I suppose I will always have a few scars from the really bad ones that bled and scabbed etc.  But, hopefully they will fade with time.  I can't believe you mentioned itching, because according to my derm., PLC is not supposed to itch. =)  My actual sores don't itch too bad.  The only time I itch really bad is just before a new outbreak of sores is coming on.  I always know when the PLC is going to flare up, because the backs of my legs will itch so bad I think they will bleed from my scratching.  Anyways, I hope this answered your questions.  Let me know what your internist has to say.  Also, I should tell you that Bromelain and Milk Thistle are both fairly inexpensive, and you can find them most places that vitamins are sold.  I buy mine at Akins, but I have seen them at my local grocery store as well.
Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Monday March 23, 2009, 02:22:28 AM
Wow, this is great info and I am so glad you tried it. I am a nurse and health teacher so I truly and fully understand the importance and 200 jobs of our liver. It may be that all of us are simply lacking a digestive enzyme which has thrown our systems off balance. Also, I read that Bromelain does help regulate hormones so this may be multi-layered. I am so afraid to get my hopes after trying think after thing. Yes, mine itch horrible when they are about to arrive which is usually also the week before my period...they get red and itchy.  Where do you live...not exactly, just curious...the State. THANKS A MILLION!!! Hope we're on to something!!
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Monday March 23, 2009, 05:41:54 AM
Hey all,

I have, in addition to this creepy PLC for the last 4 years, MS, fibromyalgia, depression, panic disorder and now cancer. How do you know that the bromelain and milk thistle that you get is pharmaceutical grade? i.e., is of such quality that you are sure it's been properly processed during the manufacturing and packaging process? They all claim that they are, but they could say anything, the supplent and vitamin industry isn't under FDA regulation. They're asked to comply, but they're not policed like prescription medications are.

Though I know how to keep my PLC under control by now, I'd love to get rid of it. With all that I now battle, it would be great to be able to cross something off my list of maladies!

Thanks!
elseaeff :D
Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Monday March 23, 2009, 10:37:08 PM
Elseaeff: I am so sorry to hear of your additional health problems. You are in our thoughts....sending you love.
Title: Re: Pityriasis Lichenoides Chronica
Post by: scrabler on Tuesday March 24, 2009, 09:22:13 AM
hi
my name is gloria and im from nf canada .i also got diagnosed with pleva in nov 2008 .it started out on my chest after a night out with the kids at the bonifire in the back yard .woke up next morning and i was broke out under my brest ,then over a couple of days i was covered from head to toe .all differant shapes and sizes .blisters ,pimple ,scally ones ,target liesons the size of a quarter .family dr. referred me to derm and i got in to see right away ,cause of the mess i was in  .from there he took 2 biopseys and a wk later another .he put me on methotrixate right away ,methotrzate is the third line of treatment ,but i was broke out so bad and my blood preasure to the roof  .my metho was 6 pills 2x3 on tues and the other 6 days i had to take a folic acid  1 x daily .it really worked for me until i had to go for surgery on feb 2  2009 and you have to stop taking metho 1 week before surgery .i still get a few here and there mostly my scalp and chest .i have a cream he gave me if a new one should appear .(ultravate cream )after i put that on  it dont take completly away but slows things down for me .
i feel really tired all the time ,no getty up and go .,my joints hurt ,mostly my shoulders and index fingures .dizzy and vison problems .i was wondering if anyone else out there had the same problems or is that another story .
Elseaeff i hope you are doing well ,thanks for the info .
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Tuesday March 24, 2009, 02:47:20 PM
thanks for asking scrabler!
I am doing a best I can. I figured out the worst scenario, and it's not that bad for me or my husband, so I've got to get him from being so pessimistic!
I wonder about the initial onset of everyone's PLC. There doesn't seem to be any rhyme or reason, no common factors to note and I've been watching this site for nearly 5 years now!
Just another word of wisdom by me.

elseaeff
Title: Re: Pityriasis Lichenoides Chronica
Post by: scrabler on Tuesday March 24, 2009, 06:20:19 PM
 will i am keeping my  fingers crossed,    hoping that this don't carry on for five or  more yrs .Even though ,i am not too bad here now .this i could put up and live with .But when i had the eruption ,that was another story ,covered from head to toe ,i didn't know what the heck i had .scary !!!!!!!
you know reading a few post myself on other forums ,i found that M.S and pleva patients have things in common ?did you notice that ? The Dr. is checking me out June 9Th (internist )about M.S ,because of my joints ,eye ,and numb patches that i get .do you have any of that  ?  myself ,personally ,i think alot of my troubles are do to my neck degeneration .(loosing balance ,falling to one side when walking , numbness in arms and legs , pain in back of head ,just above the neck .)
now  elseaeff ,i don't want you going out of your way  typing  back to right away ,but when you feel you are up to it ,i would love to from you OK .i can wait ,got nothing else to do here .will i got lots to do ,but can i do it is the ? lol
so take care and god bless
gloria the scrabbler (i love playing scrabble )
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Wednesday March 25, 2009, 01:41:33 AM
Dear Gloria,

One thing that all PLC/Pleva patients have in common is a compromised immune system. I had MS when I succumbed to PLC.

I'm sure if everyone took a good look at your medical history you'll find that your immune system was already compromised in one way or another when PLC showed its head.

I am glad to meet you Gloria. Not to be morbid, but I also have cancer, and one of my best friends in my support group, Gloria, passed this week. And you came into my life just days later. Thank you. Gloria was wonderful and I'm sure she's cheering me on to go for all the new relationships I can!

I also love scrabble! I started my children playing when they were small and I would take my turn, then I would take their turns, until now I can't beat them to save my soul! They're all avid readers and all attribute it to the fact that I would make the learn a word from the dictionary every day and play scrabble all the time. But they're gone now and far away, a son in Pittsburgh, a son in Afghanistan and a daughter in Pittsburgh who will email me but won't talk to me. Such is life.

I have always found that lavender oil is very soothing for PLC, before - after - during other treatments. It smells great and it's gentle on your skin and it rubs into the skin gently and is wonderful to soak in.

May you have a blessed week!
Linda
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Wednesday March 25, 2009, 01:09:03 PM
Hi Elseaff,

I love lavender oil, because it smells so good.  But it is an estrogen mimic; I read an article in Scientific American about three young boys (under the age of 10 I think) in one family who suddenly started developing breasts.  This is extremely rare.  To make a long story short, docs were stumped til they looked at environment.  Mother was apparently a lavender fan, and they used lavender soap, lavender body wash/lavender lotion, and lavender talc since they were young.  Apparently, lavender oil does cross dermal layer.  It showed up in their blood and the endocronologist (sp?) realized it was an estrogen mimic.  There is talk now of the FDA banning lavender in things geared toward children.  When my children were young, we didn't have lavender scented products.  But I love lavender and have seen Johnson's lavender baby products.  I'd buy them if I didn't know any better!  I am sure for us female women out there, a little extra estrogen is fine. But I did hear talk about women/breast cancer and avoiding estrogen/mimics.  Have you heard about this?  I am sorry about your cancer, and I am not sure which one you have. 
J
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Wednesday March 25, 2009, 01:10:35 PM
By the way, I forgot to mention, when the boys discontinued all lavender products, their breasts disappeared and they went back to normal within 2-3 months, I think.
Title: Re: Pityriasis Lichenoides Chronica
Post by: 1huskermom on Wednesday March 25, 2009, 04:14:50 PM
Lindadiane,

I live in Lincoln, Nebraska.  Where are you at? 

Elseaeff,
As far as a compromised immune system, I think just based on the fact that PLC is an autoimmune disease, we all have to suffer somewhat from a deficient immune system.  My PLC showed up during pregnancy, which makes sense with the whole compromised immune system idea.  I am so sorry you are suffering with so much, you are in my prayers.

I was wondering if any of you have any genetic disorders.  I have a balanced robertsonian translocation between my 13th and 14th chromosomes.  This is a fairly rare occurance, but I can't help but wonder if it is somehow tied to my other problems, like PLC.  Also, whenever I get pregnant, I get severe hyperemesis.  Hyperemesis or HG is severe nausea and vomiting in pregnancy.  I lost 19 pounds with my first son and 26 with my second.  Some of us HG moms have wondered about the role that our immune system played in our getting so violently ill.  Any thoughts?
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Wednesday March 25, 2009, 11:16:27 PM
Hello to all~

I have no idea what and what I don't have that is genetic. My parents are of the generation where any illness of mental or the unknown is just not discussed or recorded. My mother is a bipolar paranoid skitzarantic. I didn't know until I was about 28. I thought she hated me and was just weird.

I know there was a ghastly amount of cancer in my family, Pittsburgh in the 30-50s! You didn't have to work with any of the oil burning, steel melting, cave digging, polluting jobs. It was everywhere. Coal was the main power supply so everything was coated with black.

they used herbs and poultices they made and bought and are most all gone now....

pretty cool, but doesn't help me
Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Friday March 27, 2009, 12:19:58 AM
Hi Huskermom:  Where did you get your Bromelain? Did you order on line, and if so with which company? I went to our local health food store and Whole Foods and all they both carry are 500mg not the 40mg. I want to make sure I get a quality product. Thanks!
Title: Re: Pityriasis Lichenoides Chronica
Post by: jpco on Saturday March 28, 2009, 05:06:38 AM
Hey, so I'm settling down for bed, and after taking my shirt off I have realized that I am yet again blessed with those joyous spots that we here all know and love.  I have been completely clear with nothing but scars since September, and was just wondering if this is something that I should expect at the start of every spring thaw.

Also, does anyone else seem to feel a lot more sensitive to heat? And is this borderline unbearable itchiness something that everyone else has? I know the symptoms vary from person to person, but does anyone have any tips to lessen the pain? Cortisone cream doesn't seem to do much good. Anyways, thanks for taking the time to read this!
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Saturday March 28, 2009, 07:20:44 AM
Dear JPCO,

Heat and stress will bring the PLC around every time! Fatigue will also do it for me, too. I am so used to seeing the stuff that I barely notice it unless (like this morning) I wake tearing the skin from my body. One thing that I do that helps me tremendously is that I get acrylic nails. Nothing fancy, but they're thicker than our regular nails and don't tear the skin when I scratch. So when I wake up and find I've been tearing up my legs, I don't have to worry about my legs bleeding everywhere like I used to.

I take certain types of medicines that also aggravate it, but I doubt you'll ever have to worry about those. They are for the cancer and MS, so you can be safe there.

I don't mind the PLC anywhere except on my head, I hate to be somewhere and all of a sudden have to scratch my head like a dog with a tick. How embarrassing. And you know people don't know I have a skin disease and all they know is maybe she has lice?... Oh well, at my age, I'm not trying to impress anyone!

Thank you for your note of concern. I'm doing well. The bone scan shows that the cancer hasn't metastasized to my bones and I'm getting another MRI to be sure it hasn't attached itself to my liver or kidneys. Those are the three favorite spots for renegade cells.

I've had 4 operations on that left breast and have about 3 more to go. I just noticed the other day that I don't have old woman's cleavage anymore! LOL! I can even flex it! wow!

Try some lavender oil for soothing the itch and helping to calm the PLC. It's a liquid, very light and won't clog the pores so it does help with the itch. I can't tell if it helps with the PLC because I've always got so much of it in so many stages all over.

Take care, don't sunburn! Have a blessed weekend!
Yours,
Linda
Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Saturday March 28, 2009, 05:29:13 PM
Hi:

My skin itchs too and despite what the doctors say, more of us suffer with the itch then they know. They us to say that Pleva was RARE and now it's referred to as "uncommon". There are a great deal of people who have this ~ and it's global.

A short cool bath with vinegar helps when my skin gets really bad. It seems to balance the PH and reduce the itch. There are times after what my husband refers to as an "itchfest" my skin will be so overly sensitive. I get itchy after the tanning beds so I moisturize alot before and after and then two days after the bumps are flatter and itch less. My internist said to go ahead and try the bromelain so I ordered that online. Could not find the 40mg anywhere in Los Angeles. I don't want to get my hopes up but I am wishing. Also, with the folks with younger kids...did they get upset tummies when this all started. Everyone seems to have one bump that looks like a bug bite and then it spreads like mad but I've also noticed everyone has an upset tumy as the get go....is is the same for the little ones?
Title: Re: Pityriasis Lichenoides Chronica
Post by: emmamae on Sunday March 29, 2009, 02:33:30 PM
Hi Lindadiane, my daughter did not have a tummy ache before her spots appeared. She did have a cold about 3 weeks before the 2 red spots showed up on her back that did look like bug bites. She was also complaining how itchy she was the night we saw the bumps, but was not itchy at all after that. She had tons of spots but they just didnt seem to bother her at all, thank God!
Title: Re: Pityriasis Lichenoides Chronica
Post by: Ze on Wednesday April 01, 2009, 04:23:57 PM
I'm 19

I was diagnosed via biopsy with PLC one week ago, though it’s plagued me for 2 years or so. It may started when I moved to Boston fall 2007 (cold and dry).  It could have been the fact I was going on and off birth-control. It could have been the staph infection or the poison ivy I experienced this summer. I was misdiagnosed with scabies multiple times. I was so sick of going to doctors and having them waste my time. Honestly… they should have done a biopsy right off the bat.

I’m in college; it’s a social burden. I know sunlight will help my lesions but I don’t want anyone to see it. I’ve found that tea tree oil helps heal everything up temporarily. At this point, I’m waiting for my light treatment in 2 weeks; I’m quitting smoking because I heard it doesn’t help… especially because PLC is linked in some cases to an immune deficiency. I’m looking into immune support supplements. Has anyone had any luck with this?

The steroid creams don’t help… just moisturize.


One of the things really gets me about this whole PLC speil is the fact that I’m in the process of becoming what I’ve always wanted to be, a tattoo artist… I’m so afraid that this will take away one of my true passions. Is there anyone with PLC out there that has tattoos? Any long-term effects on them?




Title: Re: Pityriasis Lichenoides Chronica
Post by: pokeypup on Wednesday April 01, 2009, 11:17:23 PM
Hi Ze and everyone. I can totally empathize...I was diagnosed at 27 and absolutely hate this curse they call PLC.  I don't have tattoos but I too have a love for tattoos.  I've never heard of anyone getting tattoos AFTER they've been diagnosed with PLC, but I've read somewhere from one person with exsisting tatttoos that the PLC skips the inked areas. 

Have you been taking anything for your PLC?  I use to take methotrexate but started phototherapy in January.  I get them on my hands and I absolutely hate it.  I work as a nurse and I feel so stupid caring for people when it looks like I have something contagious on my hands.  Words can't express how much I HATE PLC.  It feels like it's taken over my life and I've been so depressed and I'm comtemplating starting antidepressents or something. :(

Anyone reading this....Is there EVER and end to it????  Is there light at the end of the tunnel?????  I hate to sound so pessimistic but I feel like I've got nothing left.  I just need some hope.
Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Wednesday April 01, 2009, 11:58:01 PM
Hi Girls...I know this must be very hard to deal with as a young women. It's hard to deal with as an old woman (LOL) of 52. I've had this now for about 6 years. The summer is worst. But I do have to tell you that my husband has been great about it. It does not gross him out or turn him off and there have been several women who got married after the diagnosis. So, you will not be alone. I have tried everything except the methotextrate....I'm just too nervous to go that far. I am a teacher and get them on my hands too, sometimes near my nose and I think oh my gosh the kids must be staring....but I will casually mention that i have ecxzema or psorasis and they blow it off like no big deal. They have never brought it up, I usually do. I ordered the bromelain and will let you know if it works.  I get my hopes up and then they are dashed. My worst time is summer....everyone in shorts and tees - everyone but me and I still have good arms...not all flabby so it's a shame they have to be hidden away. You have to work around it....get those fake tattoo sleeves or wear funky long sleeve silky blouses...can't help with the tattoos - I have none. Try to rest....I will tell you stressing over them does not help at all and just makes you unhappy.
Title: Re: Pityriasis Lichenoides Chronica
Post by: scrabler on Tuesday April 07, 2009, 09:14:23 AM
 hi to all .
i havnt been on here for a while now ,because i have other problems going on in my health .testing, surgerys and so on .i have been off the methotrexate for 10 wks now ,due to surgery ,and already the pleva is reappearing on my scalp and neck .i was wondering if any of you tried  Tramacet (the gp gave it to me for pain ,mostly for my neck )i was on it for 3 days and boy did i itch like crazy .that is not one of the side effects .i was thinking it was bringing the pleva out again . ???
take care gloria
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Wednesday April 08, 2009, 02:53:09 AM
Hi Gloria!

I haven't heard from you for awhile and now I know why. I, too, have recently have had some surgeries and have had to take pain killers (Oxycontin) and they make me break out like crazy, itching like never before. To counteract the itching, they give me a strong antihistamine or pepsid to counteract the itch. The antihistamine works fine, the pepsid works for my upset stomach that the clonazapam gives me.

To add insult to injury or vice versa, I broke my foot yesterday when I lost all motor skills in my left leg from the knee down. I happen to have several air casts (from breaking my feet from the MS) and put one on. Then I went out onto the porch to get the dog bowls to feed them and my foot rocked on the porch boards and I literally heard a "crack" and I couldn't even stand on my foot in the aircast! So, this morning I spent in the emergency room and got a splint on under the air cast and tomorrow to the orthopedic guy. Sigh.

So, more itching from the pain pills again, but I will use the lavender. I don't care if it grows breasts - after a mastectomy what can it hurt? LOL!

Let me know about the bromalaine, I was talking to a pharmacist for my MS medicine and he looked it up because it was used once as a test treatment for MS. He said the only problem he saw with it was getting it pharmaceutical grade. That's the only grade that can be trusted since it's a supplement and they're not regulated by the FDA. Your local pharmacist can tell you where to get pharmaceutical grade.

Hope you feel better and all this hasn't intereferred with your scrabble games!

Yours,
Linda
Title: Re: Pityriasis Lichenoides Chronica
Post by: Ze on Sunday April 12, 2009, 07:47:30 AM
I started taking immune supplements such as Lysine, Cod Liver Oil, echinacea. Well see if that helps. I'm also going on bromelain asap. I start photo-therapy in 5 days and I've been trying to get some sun. Anyone else found anything to help cover up the rash?

I've been dating this guy for a few months but I'm so afraid he's going to think I'm hideous with all of these dots all over me. I just want my skin back. :'(   
Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Thursday April 30, 2009, 04:31:31 AM
I've been taking the Bromelain for nearly a month....no dramatic stop but gradual changes. Less itch for the most part and the suckers are popping and clearing very fast. I'll keep you posted.
Title: Re: Pityriasis Lichenoides Chronica
Post by: J on Thursday April 30, 2009, 02:09:10 PM
Lidiane,

Do you think the gradual changes are a result of bromelaine, or perhaps you are getting a little more sun because spring/summer is here?  I am very interested in bromelaine for down the road for my daughter, when she gets a little older, assuming she still has this aggravating condition.  Please do continue to keep us posted.  I guess one would have to stay on it a good 2-3 months to see any results.  I am hopeful for bromelaine for you but don't want to get my hopes up too much.  Good luck!  J
Title: Re: Pityriasis Lichenoides Chronica
Post by: DixieDiva on Thursday May 07, 2009, 09:07:45 PM
Hi all

I'm new to this group. Not sure yet what I have, PRP, Grover's Disease, or PLC. Had my first appt with a dermatologist last week, he took 2 skin biopsies and I go back next week to get the results and see what my treatment options are.

This whole thing started in mid-March when my regular doctor froze off 2 small itchy bumps, declaring they were "age related skin changes." Some 72 hours later I noticed I had a whole new crop of tiny red itchy bumps. Went to a doc in a box on 3/29 who said I had scabies. Treated for that twice with no change except more itchy bumps, so I headed back to my regular doctor who said I didn't have scabies, but he didn't know what I had. Prescribed Eurax lotion to be used twice while he spent the weekend figuring out what I had. 4 days later he told me I had PRP (pityriasis rubra pilaris). He put me on a 15-day decreasing dose of prednisone, which did wonders till I came off it last Friday. More new bumps, more itching, I'm all but counting the hours till I see the dermatologist again.

I'm encouraged by some of the stories I see here. The derm did mention getting a little bit of sun on the rash, and seeing how many of you have gotten relief from tanning beds is encouraging. In the mean time, I'm undergoing acupuncture treatments for the itch, and taking Vitamin E, Evening Primrose Oil, Omega 3/6/9, and Curcumin w/bioperine 3x a day with meals and pushing the water. I've been using a tea-tree oil lotion I found at WebVitamins. Ice packs have helped calm the itch too. I miss my adult beverages, but the derm said to stay away from those for now.  :'(

I'm staring at 50 in a few months, and wonder if hormonal changes have anything to do with this.
Title: Re: Pityriasis Lichenoides Chronica
Post by: alphaqforever247 on Friday May 08, 2009, 09:35:58 AM
hi all have not posted here for a few years i think.  i first got diagosed with pleva in 2005.  When i first had it i had it real bad.  My derm prescribed me erythromyocin, topical steriod and she told me to lay in the sun for 20 mins every day.  i also told my derm that i have been on line and did some research and told her that people are getting good results taking acyclovir she said she never heard of that being a treatment for pleva but she perscribed me it any ways.  2 Weeks have passed by i go back for my follow up and she couldnt believe how much i cleared up in just two weeks.  she went one to say that the antibioics combined with the sun expore cleared me really good and never mentioned anything about the acyclovir lol.  So 4 years have passed and i still get breaks out here and there but recently i broke out pretty bad i can tell when imma break out cause i get real itchy.  I have erythromycin and take it when ever i have breakouts but i have been taking it for many years i think my body is immune to it now.  Is there any new type of treatments out there?  havnt gone to my derm for years since i havnt had any real bad breakouts.  should i try acyclovir again?  or a different type of antibiotic?  What treatment has worked best for all of you?
Title: Re: Pityriasis Lichenoides Chronica
Post by: lfn on Friday May 08, 2009, 01:59:00 PM
I am so glad I found this forum. I think I got PLC when I was in the Philippines back in 2000. Because when I got back that was when this all started. I went to several dermatologists like everyone else and they didn't know what it was. I finally had a biopsy diagnosed correctly as PLC only after being prescribed a bag of creams that didn't work. I took erthromycin, tetracycline which didn't work. I also went to UVB which made my skin turn hot and itchy -didn't see results, spent lots of time and insurance money going to the UVB in the doctor's office. I did see results when in the sun swimming but it wouldn't completely clear up. I went to San Diego last fall and was in the sun for awhile playing with the kids, did notice the it cleared up to a point where it was noticeable.
I am just frustrated with the look of the skin not being able to wear shorts and short sleeves when it's so hot.
I have been reading about bromelain which I may try ...can someone tell me where to buy the 40 mg pills ? also I am going to try the tanning route. Lately my skin has been itchy for some reason ...When I had my second and third child the condition cleared up, but only a little bit.   Like everyone else, this PLC has gotten my down because there hasn't been a way to get rid it !!!
Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Friday May 08, 2009, 11:00:14 PM
IFN you sound like me. Do you live on the west coast? I am on the Bromelain, one month now. I am noticing stuff - the plevas are popoing like crazy and I do not seem to be getting new one. I seemed to have had lingering ones that never popped...just turned ino these bumps/ Well those are now leaving the expected scars. I ordered my Bromelain on line from Akins because it was the only place that carried 40mg...I could not find the 40 anywhere in LA. If you don't mind me asking, hw old are you? Also, to all the new people, welcome. Do not be discouraged...while I am not one who cleared there are many who clear within a year. Hang in there. = )
Title: Re: Pityriasis Lichenoides Chronica
Post by: lfn on Saturday May 09, 2009, 01:01:31 AM
I live in the Southwest. Do you think the Bromelain is making a difference compared to other medication/treatments you have had in the past? I tried to find 40 mg too and can't find it in any stores, thanks for the Akins tip. I had the PLC since I was 30 yrs and now 38 yrs. Thanks for the words of support. I am all for any kind of natural treatments to this PLC. Also, in an earlier posting someone mentioned there were pictures of the before and after of people on the Bromelain trial does anyone know of that link where I can see them?
Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Saturday May 09, 2009, 04:36:27 PM
I could not find the pics either. You came down with yours around the same time I did. I think I am going on year 7. There are definite changes in my skin. I don't want to be skeptical but they are not gone. I am so anxious for something to work I did not want to get my hopes up. I read somewhere that it takes as many months for this to go away as years you have had it so for me it would be 6-7 months. Either way the Bromelain tastes good, like a candy almost, and cannot harm you. I checked with my internist before I started ~ wanted to make sure it was safe and he OKd it...so it won't hurt you. It's actually AKINS and I got the tip from someone else in here. I will say that I have not gotten any news ones. My skin is just so bad and they itch sometimes to the point that I scratch the tops off. From the healing so far I can see I will have white scars and some purply scars and they are small. But I have heard they eventually go away. I would just LOVE to wear a sleeveless or short sleeve shirt again and some capris or shorts. I have clusters on my ankles so I always wear long pants, My arms do see to be getting better but not yet ready for short sleeves. I live in Los Angeles and it's been 98 degrees..UGH!!
Title: Re: Pityriasis Lichenoides Chronica
Post by: lfn on Saturday May 09, 2009, 07:14:03 PM
If you aren't getting any new ones that's encouraging. Also it does make a world of difference not taking a hot shower, my skin always felt like it was on fire when I took hot ones in the past. Out of habit, a bad one is I also scale the tops off because they come off easily. I have a lot on my inner thighs and they are bright red sometimes. I think I am going to order the Bromelain and try it. I hate going to the derm doctors, they seem not to have any answers, which isn't their fault I guess. It's always a story to tell people what skin disease you have and there is NO cure for it.
Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Sunday May 10, 2009, 06:09:40 AM
You are much braver than I am...I just try to stay covered up since most people gawk. It makes for a very uncomfortable summer. Can someone post the Bromelain pics here....please?
Title: Re: Pityriasis Lichenoides Chronica
Post by: DixieDiva on Monday May 11, 2009, 02:02:01 PM
How much bromelain are you taking per day? I'm willing to try most anything at least once. I also found the 40 mg size at Vitamin Shoppe.

Is there anything wrong with popping these things when they come up? I admit to doing that myself, seems to make them go away, but then I'm still getting new outbreaks.

Has anyone tried Lac-Hydrin lotion?

Many thanks! I'm glad to know there are others who are as miserable as I am.
Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Tuesday May 12, 2009, 01:13:24 AM
DixieDiva: Thanks for admitting you pop them because to me it seems when I do they dry up and stop itching. I've even scrapped the surface off or picked the dried up tops off (which I am sure does not help the look of my skin) but gives me relief. I have not tried a lot of different creams because some sting like crazy. What does the one you use do? Moisturize or relieve the itch? Where in the south are you? Do any of you have really dry flakey skin?  Sometimes it seems like I have body dandruff but I think part of that is my skin turning over so frequently. I can cream and vitamin e oil my skin three times a day and it's still dry.  It also seems to me that people who are more olive complexted and those with oily skin seem to get over this much faster, Oddly, for as much sun and tanning booth as I have gotten over the last few years I do not burn at all like I would when I was younger.
Title: Re: Pityriasis Lichenoides Chronica
Post by: DixieDiva on Tuesday May 12, 2009, 02:48:22 PM
A friend of mine said she had used Lac-Hydrin lotion when she had outbreaks of Grover's Disease. (I was actually stunned to find out someone I know has had this, considering it's rarity.) She said the lotion burned like h*ll going on, but it cleared up the rash quickly. For right now, I'm using a Tea Tree Oil lotion I found at webvitamins.com, it moisturizes and relieves the itch, and I actually like the smell of it. I've been using ice packs when the itch gets really bad.

I started taking bromelain yesterday after tracking down the references to it in this thread. I see the derm today for biopsy results and to get my stitches out, and plan to ask him about the bromelain. I'd like to try that before resorting to the harsher drugs that are available. I'm also using a tanning booth 5 minutes a day, and acupuncture 2 - 3 times a week.

I'd always had dry skin as a kid and through my 20s. When I turned 30, my skin decided to go into puberty and the oil glands turned on and I found myself with adult acne. Who knew you could put 'adult' and 'acne' together in the same sentence? My brother got the olive skin, I got the fair complexion. I'm in north Alabama where the weather has been most uncooperative if you're looking for the sunny south. I'd rather have some scars than this nasty rash.
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Tuesday May 12, 2009, 03:43:09 PM
DixieDiva: Thanks for admitting you pop them because to me it seems when I do they dry up and stop itching. I've even scrapped the surface off or picked the dried up tops off (which I am sure does not help the look of my skin) but gives me relief. I have not tried a lot of different creams because some sting like crazy. What does the one you use do? Moisturize or relieve the itch? Where in the south are you? Do any of you have really dry flaky skin?  Sometimes it seems like I have body dandruff but I think part of that is my skin turning over so frequently. I can cream and vitamin e oil my skin three times a day and it's still dry.  It also seems to me that people who are more olive complexted and those with oily skin seem to get over this much faster, Oddly, for as much sun and tanning booth as I have gotten over the last few years I do not burn at all like I would when I was younger.

Hi! I've been dealing with this mess for 4 years now, I'll be 53 in a few months. I used to pop these suckers all the time until I got a really bad staff infection. Then came the lecture from my doctor.... there are strains of staff that do not respond to penicillin and it's a doozie of an infection, possibly causing herpes, boils, cold sores, and a score of other things. It is called MRSA and has evolved several times and is very resistant to most antibiotics.

Not to mention that instead of little light scars from the spots that flake and can be just flaked off, now I have dark brown scars that really look bad.

My derm has been named #1 in Richmond for 5 years running and she's never heard of bromelain. I've sent her some info on it, but I'm not taking anything that she isn't aware of. I keep things under control by everyday personal keeping from the showers I take to the creams I use. After 4 years it's a no brainer for me.

As for worrying about what others say, I just don't care. I also have MS and Cancer. So, let them walk a mile in my shoes before judging me and my scars.

later!
Linda
Title: Re: Pityriasis Lichenoides Chronica
Post by: Jkel on Tuesday May 12, 2009, 07:12:53 PM
 Thanks
Title: Re: Pityriasis Lichenoides Chronica
Post by: DixieDiva on Tuesday May 12, 2009, 07:57:42 PM
Just returned from the dermatologist. Biopsy results were inconclusive for scabies, Grovers, or PLC/PLEVA. So he took 2 more biopsies and said he wants to treat for scabies again, just to completely rule it out. I'm iffy on doing that again. NO ONE I have been in contact with since March, including my husband, has shown any signs of scabies. He also told me to get rid of my cats since they can carry the scabies. According to my research that's not true, and I resent him telling me to get rid of my cats when he can't definitively tell me what I've got. I guess I'm willing to do the scabies treatment again, but I don't see the point of subjecting my husband to it when he's shown no signs of it over the past 2 months.

Suffice to say, I'm a little frustrated right now.
Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Tuesday May 12, 2009, 11:27:41 PM
Hi Jkel:  I took the Bromelain 3 times per day...,morning, afternoon and evening. I am following their advice and I am now down to 2 eper day..one in the morning and one at night. IF, and I mean IF, it works I will just stay on the 2 per day. I have noticed my sinuses seem better - lots less allergy stuffiness.

Dixiediva: Why treat for scabies when he/she isn't sure? Don't you just love doctors?
Title: Re: Pityriasis Lichenoides Chronica
Post by: DixieDiva on Wednesday May 13, 2009, 03:17:08 PM
Dixiediva: Why treat for scabies when he/she isn't sure? Don't you just love doctors?
My thoughts exactly, especially when my husband has shown NO signs of it after nearly 3 months. If I've had scabies for 3 months, then by rights so should he.

I started the bromelain Monday after lunch. I've had one spot on my face under my left eye, and last night noticed it looked less red. This morning showed more improvement to that spot and to the rest of the rash. I still feel like I have chicken skin, especially on my chest and shoulders and back, but this morning there was less redness and the tiniest bit of smoothing out.

One thing I do notice is the frequent sensation of something crawling on my skin, usually arms and chest. And there's on spot on my chest that almost perpetually tickles. Anyone else have that sensation?
Title: Re: Pityriasis Lichenoides Chronica
Post by: lfn on Wednesday May 13, 2009, 06:19:49 PM
Thanks for the top on The Vitamin Shoppe selling 40 mg Bromelain. There is one by my house. Recently my skin does feel like something is crawling on it. I noticed myself scratching more maybe because it's much drier because of the weather??  I also hear everyone on doctor diagnosis. for the longest time medical people kept telling me "wow I have never seen this before.."but they prescribed creams they "thought" would cure it, what a waste of my money. I have a bag full of creams to prove it.
Title: Re: Pityriasis Lichenoides Chronica
Post by: DixieDiva on Wednesday May 13, 2009, 09:18:21 PM
Thanks for the top on The Vitamin Shoppe selling 40 mg Bromelain. There is one by my house.
Sign up for their frequent buyer program. It's free. You get points when you buy stuff, and at the end of the year they send you a gift card to spend in their stores.

Thanks for confirming that crawling sensation. I wondered if it might be associated with the tiny scabies critters moving around, but maybe not.

Talked to my regular doctor's office this afternoon, he's going to see about getting me in to see a different derm. Even with a referral I'm probably still looking at 6 - 12 weeks. I'll just keep doing what I'm doing and hope that between the bromelain and the tanning bed it clears up on its own.
Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Wednesday May 13, 2009, 11:02:13 PM
Hi: I noticed my bumps seemed redder and then flatter. I'd say after one month a slight improvement. I have had a stinging and occasional crawly feeling...I was worried for a time this was some strange parasite. The days I do the sun since the Bromelain I noticed my skin looks better. I think I also have food allegies...I seem more itchy after I eat 2 - 3 hours ~ do you get that at all? maybe Ihave a combination of things. I might try a cleansing diet once I'm off work this summer. My skin is ALWAYS dry and being peri-menopusal does not help that - nor does the sun. Was anyone able to get to the pics?
Title: Re: Pityriasis Lichenoides Chronica
Post by: Jkel on Thursday May 14, 2009, 12:31:54 PM
Thanks Lindadiane fingers crossed
Title: Re: Pityriasis Lichenoides Chronica
Post by: DixieDiva on Thursday May 14, 2009, 06:05:40 PM
Keeping my fingers crossed for you lindadiane. I'm seeing a little bit of improvement every day, less redness, little more flattening of the bumps.

As for the food allergies, try keeping a diary of what you eat and when the itching starts. Might help pinpoint what's causing it. I notice I have flare ups of itching  shortly after I get to work (maybe I'm allergic to work after all?), after I get home and change clothes, and usually wake up during the night scratching. Last night was the first night in nearly 2 months I didn't get woken up. I hope that's a good sign. I'm also noticing that crawling sensation is diminishing.

There's hope.
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Thursday May 14, 2009, 06:38:04 PM
Good Day Girls! :hi:

One of the worse irritants for me is shaving my legs. After I shave, I have so many problems with burning and bleeding and all kinds of things. Then, the hair grows in and I get that crawly sensation because the hairs are growing in and back onto my skin. What a nightmare. I had been getting my legs waxed, but that was getting expensive.

Today I received the "as seen on tv" Ultra Smooth Hair Removal system - yeah, the one where it looks like black sandpaper on a pink rubber hand holder and you just rub the hair away. Well, let me tell you, not only does it remove the hairs, it removes all dry skin, all brown spots, all bumps and all new bumps - no bleeding, no burning. I put vitamin E cream on my skin afterwards and my legs actually look good!

I can't tell you how excited I am about these hair removal things! The skin on my legs is as smooth as a baby's bottom and there are no bumps and I was covered with them!

You've got to try these! I paid $20 for 2 sets of them and they come with 5 refill pads. I only used one pad to do both legs (and my hair was long enough to braid)! I am psyched! I believe I will be able to wear sundresses and shorts this summer!

Thought I'd share this with you, shaving is one of the big problems I had and then the hairs growing back in giving me the creepy crawly feeling was awful. My skin felt like paper. Now it's beautiful for the first time in years!

These things are great~ it also comes with little ones to do your lip, eyebrows or sideburns if you need.

I would do the happy dance if I didn't have a broken foot!

Linda
Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Thursday May 14, 2009, 11:26:02 PM
Linda I am trusting you and will order them tonight!!

Dix & Jkel: Also, since starting the Bromelain I have not been waking up so much itching...sometimes on weekends when I wake up atfer 8 or 9 hours sleep...but not during my usual 6-7 hours. If it isn't an instant cure for me I certainly hope it is for you and I will be SO jealous = )
Title: Re: Pityriasis Lichenoides Chronica
Post by: lfn on Friday May 15, 2009, 12:41:45 AM
wow I may order those pads too! I wonder if they sell them at Walgreens or Target (have a As seen on tv section) I just bought the Bromelain today and will start taking them tomorrow.
What lotion do you all use? It seems my skin gets sooo dry a couple hours after I just moisturized.
Title: Re: Pityriasis Lichenoides Chronica
Post by: elseaeff on Friday May 15, 2009, 03:25:24 AM
Hey there,

I rotate between Vitamin E (The Body Shop) and Lavender Oil (very light - also the Body Shop). When I shower I use Lavender Baby Oil Gel before I dry. I put it on lightly and rub it in very well, then dry. That way the baby oil gel keeps the moisture in my skin. Lavender is also good for depression...

Of course, Vitamin E is great for skin.

Linda
Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Friday May 15, 2009, 03:37:07 AM
Aveeno also makes a great body wash and bath oil with oatmeal and/or lavender and lubriderm is also good.
Title: Re: Pityriasis Lichenoides Chronica
Post by: BarbMac on Friday May 15, 2009, 05:11:31 AM
Hi Folks.
My name is Barb and I used to be on Suite101.
Three years ago I came down with a bad dose of PLEVA. I actually do not have too many spots to deal with, but my nervous system seems to be under attack. This time I have had problems with my eyes. My Optic nerve malfunctioned. I felt as though I had been punched in the eye hard. Anyway. I went on my old friend Gabapentin and I seem to be doing OK. My whole system is under attack though still and I seem to have to rest and "take care " of myself all the time.
In case none of you know, I had my first bout of this that was diagnosed when I was 27 and am now 65, so that may be some comfort to you fellow sufferers.
I do use a cream when they are red and sore, and if I can catch them before they become too angry this cream really helps. It's called Fucidic acid.
Some one mentioned that it is rather a strong cream, but I do find that it really helps. Three years ago I was pretty much stuck to my bed for about three months and it took a while to get going again. One problem was that It seemed to attack the linings of my legs and I had a hard time walking. This time I can feel all the old soreness but am able to keep going. I do have a pain in the back of one leg that comes and goes, it seems to be bad when I sit down and go to bed, good incentive to keep up and going !!!!!
Three years ago the feeling of tiredness was overwhelming, this time as I say I seem to be able to keep up and running, although I do still feel more tired than I think I should be.
It's great to be back in a forum  Hugs to all. Barb
Title: Re: Pityriasis Lichenoides Chronica
Post by: lindadiane on Friday May 15, 2009, 06:14:51 AM
Hi Barb:

I was wondering how you were doing. My computer crashed so I was not able to email you any longer. I'm sorry you're having visual issues, but you do sound more mobile then before. It's good to hear from you again!! Warmly, Linda K.  PS How's the music going?
Title: Re: Pityriasis Lichenoides Chronica
Post by: DixieDiva on Friday May 15, 2009, 03:58:27 PM
I just bought the Bromelain today and will start taking them tomorrow.
What lotion do you all use? It seems my skin gets sooo dry a couple hours after I just moisturized.

Why wait? Start taking the bromelain now, at your next meal. The sooner you start the sooner you may see results. They taste good too! Here's some other possible uses for bromelain: http://en.wikipedia.org/wiki/Bromelain and another article from University of Maryland: http://www.umm.edu/altmed/articles/bromelain-000289.htm, so lindadiane, the improvement in your sinus condition may well be the result of the bromelain.

Lotion - I've been using Nature's Gate Tea Tree Lotion from webvitamins.com: http://www.webvitamins.com/product.aspx?id=3827 Tea Tree oil has a lot of anti-everything properties, and I actually like the smell of it, although some may not. Emu oil is another good moisturizer and can also be found at webvitamins.com, although it can be pricey.

A friend of mine who's had Grover's used Lac-Hydrin lotion at her dermatologist's suggestion. Wal-Mart carries a generic form called AmLactin, available from the pharmacy without a prescription. It contains lactic acid which may be irritating and burn or sting if you've been scratching. It's also kinda sticky and smells like amonnia, but after using it once last night I noticed less redness this morning. Not sure that it's a cure, but it might help your dry skin. A little goes a long way, a 14 oz bottle was about $11.

I also take Evening Primrose Oil which is good for helping skin, and also good for breast health. And I try to drink as much water as I can to keep hydrated on the inside.
Title: Re: Pityriasis Lichenoides Chronica
Post by: lfn on Saturday May 16, 2009, 01:07:34 AM
I am nursing right now and want to wait to hear back from my doc on this. Everything I read seems to indicate there isn't any research or data to say if it's okay to take while breastfeeding. It does say not to take if pregnant.
anyone take Bromelain while nursing?
Title: Re: Pityriasis Lichenoides Chronica
Post by: Dan101 on Wednesday May 20, 2009, 12:43:38 PM
Hello,

I'd like to introduce myself, and talk a little about Bromelain.

I'm in my mid 40's, and I was diagnosed about 6 months ago with PLC - I've had it for a little over a year.  Based on what I've read here, I would characterize my case as typical, and not severe.  I have lots of spots that come and go - never on my head, and rarely on my extremities.  They sometimes itch lightly.

I've tried an anti-viral medication Valacyclovir (Valtrex) - I had Shingles occur in the middle - which was ineffective.  I came here and learned about Bromelain, and after trying pineapple for a little while, which seemed to help slightly, (maybe), I decided to go for the Bromelain.

I wanted to report on my ongoing progress with the Bromelain, which I just started taking a week ago, regardless of whether it works or not, just so there would be another data point.

Those looking for more information on Bromelain, can find the small study of 8 patients linked at the bottom.  I noted this study did not include a control group, double-blind methodologies, or other qualities that would make the study more impactful.  (If anyone is aware of any other studies, I would be interested in hearing about them.)  Their report indicates what to do and mentions that no side effects were encountered.  However, I would caution people to read up on Bromelain because it can have side effects.

The dosage called for in the study is apparently fairly low, at 40mg, 3x per day for a month, and tapering down from there.  As many of you have found, finding pills as small as this is somewhat difficult, most are 250mg, 500mg, or even greater.  The higher dose pills can be used for inflammation control and pain relief.  Here's a tip, look for the chewables - they're the only ones that seem to come in this dosage, and are quite tasty too :-). 

I wound up with a 100mg chewable tablet found at Whole Foods.  I did find some web sites with the 40mg dosage and was going to order if I couldn't find it locally, which I did.  If you search "bromelain chewable 40 mg" on google, you'll find plenty of hits.

For the first week, I did not reduce the pills to the dosage as indicated in the study, but took 100mg 3x per day.  I am now cutting the pills in approximately half, so I'm now taking pretty close to the indicated dosing.

I've got to get to work now, but I'll report on my progress to date later, and then hopefully on a regular basis.  I'll just say that so far, signs are positive.

The study by Massimiliano R, Pietro R, Paolo S, Sara P, Michele F.:
http://www.ncbi.nlm.nih.gov/pubmed/17671882?dopt=AbstractPlus

Additional info:
http://www.raysahelian.com/bromelain.html

Take care all,

Dan

Title: Re: Pityriasis Lichenoides Chronica
Post by: DixieDiva on Wednesday May 20, 2009, 04:58:22 PM
I had my first visit with a second derm on Monday. She seems to think whatever I have is Grover's disease, but wants to wait till she gets all my files and biopsies from the first derm. She offered to prescribe a host of meds, but was OK with letting me continue to try the bromelain and tanning booth for now. I go back in 2 weeks for a follow up. The only thing she prescribed was doxypin to help me sleep, and Eledil cream for the worst remaining spots. As luck would have it, I'm about 85% clear of rash right now and only minimal itching. Not sure what has worked, if it's run it's course, or if I have something else entirely. I may never know.

The problem now is the appearance (and staying power) of an excruciating headache. It made an appearance late Sat morning. I put it off to not eating breakfast. Eating lunch didn't help, taking a nap didn't help. I finally took 2 Tylenol PM and went to bed at 9 Sat night. I had a little bit of headache left Sun morning when I got up. Took 2 Execedrin Migraine late Sun morning and within an hour was headache free the rest of the day. It came slamming back Mon morning. When I finished at the derm's office and getting my presciptions filled, I went home and went to bed, around 2 PM. It was still with me later that afternoon when I got up. And was still with me when I got up at 4:30 yesterday morning to feed the cats. It was bad enough I didn't go to work. After another dose of Excedrin PM and some more sleep, it let go yesterday afternoon. Now it's back, although it seems to be responding to Excedrim Migrain again. I can't figure out what's triggering it, unless it's the bromelain. It's the only thing I've consistently taken every day. It would just be my luck I find something non-toxic to treat my rash but it cause