Author Topic: Pityriasis Lichenoides Chronica  (Read 576846 times)

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Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #20 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

Offline Janice

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Re: Pityriasis Lichenoides Chronica
« Reply #21 on: Thursday March 03, 2005, 02:14:59 PM »
the larger ones are yes, apart from trousers nothing!!!!!!!!!!!

Offline Karen19

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Re: Pityriasis Lichenoides Chronica
« Reply #22 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.

Offline Janus

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Re: Pityriasis Lichenoides Chronica
« Reply #23 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?

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #24 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   

Offline Karen19

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Re: Pityriasis Lichenoides Chronica
« Reply #25 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.

Offline Janus

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Re: Pityriasis Lichenoides Chronica
« Reply #26 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.

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #27 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




Offline Janus

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Re: Pityriasis Lichenoides Chronica
« Reply #28 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





Offline Karen19

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Re: Pityriasis Lichenoides Chronica
« Reply #29 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.

Offline Plshart

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Re: Pityriasis Lichenoides Chronica
« Reply #30 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

Offline Angela7

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Re: Pityriasis Lichenoides Chronica
« Reply #31 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

Offline Karen19

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Re: Pityriasis Lichenoides Chronica
« Reply #32 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.

peterb

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Re: Pityriasis Lichenoides Chronica
« Reply #33 on: Saturday March 19, 2005, 06:15:35 AM »
Hi Trish

Welcome to the forum.

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #34 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

Offline Janus

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Re: Pityriasis Lichenoides Chronica
« Reply #35 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....)

Offline Janice

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Re: Pityriasis Lichenoides Chronica
« Reply #36 on: Tuesday March 29, 2005, 12:29:17 PM »
they are scaly but not itchy, im still waiting to see derm
janice

Offline Mella

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Re: Pityriasis Lichenoides Chronica
« Reply #37 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!

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #38 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

Offline Karen19

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Re: Pityriasis Lichenoides Chronica
« Reply #39 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: