Author Topic: Pityriasis Lichenoides Chronica  (Read 262236 times)

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Offline J

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Pityriasis Lichenoides Chronica
« 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

peterb

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Re: Pityriasis Lichenoides Chronica
« Reply #1 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.

Offline Bamawing

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Re: Pityriasis Lichenoides Chronica
« Reply #2 on: Wednesday January 19, 2005, 06:56:08 PM »
Welcome to you and your daughter! :hi:
I'm more confused than a mood ring on a paranoid bipolar schizophrenic chameleon in a bag of skittles!

Offline Mharie

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Re: Pityriasis Lichenoides Chronica
« Reply #3 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

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #4 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

Offline Mharie

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Re: Pityriasis Lichenoides Chronica
« Reply #5 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

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #6 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



   

Offline Mharie

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Re: Pityriasis Lichenoides Chronica
« Reply #7 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

Offline munag03

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Re: Pityriasis Lichenoides Chronica
« Reply #8 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
"By the time I recognize this moment, this moment will be gone" - John Mayer

peterb

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Re: Pityriasis Lichenoides Chronica
« Reply #9 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.

Offline silbi74

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Re: Pityriasis Lichenoides Chronica
« Reply #10 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!


Offline munag03

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Re: Pityriasis Lichenoides Chronica
« Reply #11 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.  :-\
"By the time I recognize this moment, this moment will be gone" - John Mayer

Offline Gail M

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Re: Pityriasis Lichenoides Chronica
« Reply #12 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.




peterb

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Re: Pityriasis Lichenoides Chronica
« Reply #13 on: Friday February 25, 2005, 06:43:25 AM »
Hi Gail M

Welcome to Skincell.

Gobe

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Re: Pityriasis Lichenoides Chronica
« Reply #14 on: Friday February 25, 2005, 09:03:17 AM »
 :hi:

Welcome to Skincell Gail!

 :)

Offline Janice

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Re: Pityriasis Lichenoides Chronica
« Reply #15 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?

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #16 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

Offline Janice

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Re: Pityriasis Lichenoides Chronica
« Reply #17 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

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #18 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

Offline Janice

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Re: Pityriasis Lichenoides Chronica
« Reply #19 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