Author Topic: Pityriasis Lichenoides Chronica  (Read 275759 times)

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Offline PLCBrazilmom

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Re: Pityriasis Lichenoides Chronica
« Reply #800 on: Sunday February 21, 2010, 12:09:24 PM »
Hello everyone

I found this interesting summary of an article comparing the course of PLC in children and adults from the archives of the British Journal of Dermatology.

http://www3.interscience.wiley.com/journal/117983957/abstract?CRETRY=1&SRETRY=0

Here's the conclusion of this study:

"This is the first study to compare PL in children and adults. Our findings suggest that, compared with adults, PL in children is more likely to run an unremitting course, with greater lesional distribution, more dyspigmentation and a poorer response to conventional treatment modalities."

In one word: disheartening.

My daughter continues to show multiple new lesions no matter what we do. She is going into her 4th month of phototherapy, after taking antibiotics for 2 months. Last week during the Carnaval holiday I decided to use sunlight as an additional weapon. It's so incredible. She stood in the hot Brazilian sun for 3 hours (wearing SPF 50 sunscreen) and the bumps seemed to vanish as if by miracle. Only they reappear after a couple of hours and new ones continue to appear overnight. I feel that what previous posters said about light treatments being a paltry substitute for the real thing, the SUN, is absolutely right.

I just wish my daughter would be a little more cooperative when I ask her to sunbathe. She just can't stand to sit in the sun, nags and complains a lot because she is so active.

Doctor says that she wants to see her again in 15 days and is hinting at "going a step up in the therapeutic ladder". Does anybody know what that might be? Medications or PUVA?

Thanks in advance for your answers.

With my kind regards and wishes of a healthy skin to everyone.




Offline elseaeff

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Re: Pityriasis Lichenoides Chronica
« Reply #801 on: Sunday February 21, 2010, 12:47:12 PM »
Dear PLCBrazilmom:
That description of the course of plc in children is almost on target for me. I'm going to be 54, this being my 6th year of having PLC. The best cure for this, though temporary, is sunlight. About 15 minutes of unprotected sunlight (work up to that time), then lather on the highest SPF you can find.

I have found the oils that derms prescribe for itch doesn't work, they're too thick and clog the pores.

I read the study, but also noted it was a private study, limited in it's participants (preferred?) and know that it would never pass FDA regulations.

My plc is always in action, in all different actions that the disorder takes: papules, brown flakes, paper skin, you know the way things go.

Here's to hope!
Linda

Offline PLCBrazilmom

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Re: Pityriasis Lichenoides Chronica
« Reply #802 on: Tuesday February 23, 2010, 12:59:01 AM »
Hi Elseaeff

The number of subjects is small in virtually all PLC studies I've read. I think it's probably because the disease is 'rare'. I wonder how rare it is, does anybody know? It's about time some doctor had the idea of making an Internet database of PLC cases so start figuring out what works and what doesn't. Would you say that PLC is one of those orphan diseases that get no research funding?

I'm just babbling here, so frustrated right now.

My daughter is such a beautiful girl. Long dark wavy hair, lovely features and she had the most beautiful and perfect olive skin. Now she has hypopigmentation really bad, scars, bumps and hyperkeratosis all over now. I know that I should concentrate on the positive side, that she is not sick with a life-threatening disease, that she seems to be taking it courageously, that she has a loving family who supports her.

But how do you get over the loss of beauty? It makes me miserable to see this happening to my daughter.

Sorry for the outburst.

 

   

Offline emmamae

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Re: Pityriasis Lichenoides Chronica
« Reply #803 on: Tuesday February 23, 2010, 07:43:39 PM »
Hi Brazilmom, please don't apologize for an outburst, we all get them and feel them over pleva/plc! I am not able to pull up the article for some reason. Did it happen to mention in the study any theory on how people acquire plc/pleva? Do they still think it is viral/unknown origins?

Thanks

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #804 on: Wednesday February 24, 2010, 03:34:02 PM »
Hi Elseaeff

The number of subjects is small in virtually all PLC studies I've read. I think it's probably because the disease is 'rare'. I wonder how rare it is, does anybody know? It's about time some doctor had the idea of making an Internet database of PLC cases so start figuring out what works and what doesn't. Would you say that PLC is one of those orphan diseases that get no research funding?

I'm just babbling here, so frustrated right now.

My daughter is such a beautiful girl. Long dark wavy hair, lovely features and she had the most beautiful and perfect olive skin. Now she has hypopigmentation really bad, scars, bumps and hyperkeratosis all over now. I know that I should concentrate on the positive side, that she is not sick with a life-threatening disease, that she seems to be taking it courageously, that she has a loving family who supports her.

But how do you get over the loss of beauty? It makes me miserable to see this happening to my daughter.

Sorry for the outburst.

 

   

I have some good news about the long-term effect on the skin for you. I had PLEVA/PLC from about age 16 to age 30. Bad case at times. Today, at age 57, I have only a couple of white spots and some scars where bad lesions were. However, PLEVA/PLC only rarely appears on the face, feet or hands, so the scars are not really visible unless you get close.

At age 30, a derm told me to use sunlight and tanning booths (for those under the swimsuit places) and I never had another lesion.

The disease is rare enough that there is no scientific research going on. By scientific i mean large studies that lead to reproducible results. Bear in mind that you would need hundreds of cases over decades to get such results, and because it occurs in humans only, you can't do certain experiments ethically.

All this stuff about "autoimmune" and "virus-caused" is really just speculation. There is no cause-and-effect evidence. However, that means you don't have to avoid certain foods or detergents ... good news.

The presumed action of various medicines, except perhaps methotrexate, which is highly toxic, is also questionable ... because PLEVA/PLC comes and goes. You never really know if the pill worked or the rash just got temporarily better.

However, doctors do have eyes and brains, and they have determined that the first-line therapy is sunlight. The initial outbreaks will be stubborn, but sun will probably halt them, and perhaps clear them completely. If she has olive skin, than means she can take more UV without serious problems, which is also good. Elseaeff is absolutely right about tanning booths. You don't need fancy treatments at the doctor's office (as my derm told me), just ordinary sunlight. Maybe get her one of those tiny Brazilian bikinis ... the dental floss... and have her outside without sunblock for shorter periods, so it's not so much of a time burden.

And as you'd expect with a rare condition, the doctors have no clue as to why sunlight works. It just does.

Someday, I'm sure, somebody will invent a cure or determine a cause. In the meantime, what you can do is control the outbreaks until the condition goes away, which it will ... within one to 20 years.

Offline emmamae

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Re: Pityriasis Lichenoides Chronica
« Reply #805 on: Wednesday February 24, 2010, 05:31:48 PM »
So true about the meds dr's prescribe. My daughter only had our her outbreak for a short time and was on steroid cream and antibiotics. I feel like the steroid cream was working because it seemed like the day she was using it the spots started fading, but in reality, it was probably just the pleva's time to leave. Her doctor just thinks her immune system knocked it out regardless of the medication they put her on. We also did sunlight, she is very very fair so it was a little scary. We let her run around naked in the backyard all the time, that was the only way. We would take her to the beach too, in her little bikini spots and all, and thankfully no one even seemed to care or notice her spots. She did have them  on her face at her hairline, she had it really bad. When they left they left in the order they came. She had white pigmentation spots that now over a year later are starting to really, really fade.  She has not had any out breaks for over a year and I am still wondering if it will come back.  She even got chicken pox this year and I thought Oh man this will for sure bring it back, but it didn't. I am hoping this is it. But who knows, I also wonder how long I will worry about it coming back? I also have a fear that if it does come back, it wont leave so easy again. Who knows? I guess time will tell.

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #806 on: Wednesday February 24, 2010, 05:51:59 PM »
So true about the meds dr's prescribe. My daughter only had our her outbreak for a short time and was on steroid cream and antibiotics. I feel like the steroid cream was working because it seemed like the day she was using it the spots started fading, but in reality, it was probably just the pleva's time to leave. Her doctor just thinks her immune system knocked it out regardless of the medication they put her on. We also did sunlight, she is very very fair so it was a little scary. We let her run around naked in the backyard all the time, that was the only way. We would take her to the beach too, in her little bikini spots and all, and thankfully no one even seemed to care or notice her spots. She did have them  on her face at her hairline, she had it really bad. When they left they left in the order they came. She had white pigmentation spots that now over a year later are starting to really, really fade.  She has not had any out breaks for over a year and I am still wondering if it will come back.  She even got chicken pox this year and I thought Oh man this will for sure bring it back, but it didn't. I am hoping this is it. But who knows, I also wonder how long I will worry about it coming back? I also have a fear that if it does come back, it wont leave so easy again. Who knows? I guess time will tell.

Wow! I am glad to hear that. It's been a while since I've visited this board, so I'm very happy to hear your little girl is better. Hope it stays gone. It don't know when mine went away forever ... sometime between 30 and 36 years old ... because I kept it completely controlled at the tanning booth. When my first son was born (age 36) I didn't have time to go, but the spots never returned.

Offline elseaeff

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Re: Pityriasis Lichenoides Chronica
« Reply #807 on: Wednesday February 24, 2010, 10:39:08 PM »
Hey there!

I have had more than a dozen major surgeries this year for cancer and my multiple sclerosis and fibromyalgia is out of control, flaring so badly that I must keep enough medication in me to avoid seizures. I have not been clear anywhere on my body for the past 18 months! No cure is working because my central nervous system is under constant attack from my immune system (the MS which began  23 years ago). All I have during this time is baby oil gel rubbed into my skin after a shower before I dry and an antihistamine called hydroxycide that helps me to stop itching.

I must inject interferon every week for the MS and it sends the pLc into a real roll! It morphs all of the time, all over my body in different areas. It may just be itchy bumps on my left leg right now while my right leg is burning and hurting so badly that I can't walk (fibromyalgia) and the PLC here is papules, all breaking open and oozing everywhere. At the same place, my shins are shining with skin like paper and my arms look like I have psoriasis. I have spots between my toes and fingers and about up to an inch into my hairline. My husband tells me that I've also got spots in my ears, nose, and under my arms.

And, yes, we are orphans in the world of unhealthy individuals. There aren't enough of us who have plc to warrant any pharmaceutical company the research and development and years of study that it takes to develop a drug for something like PLC. So we all band together and try to keep ourselves as healthy as can be by sharing our suggestions and successes in dealing with this wicked little disorder that causes too much pain and agony.

 :bounce:

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #808 on: Friday March 19, 2010, 02:46:17 PM »
Hello everyone,

I have been debating for a month or so on releasing this information because I don't want to be premature.  A little background.  My daughter developed PLC when she was 2.  (She is 11 now).  The docs told me it would likely last 10 years or so and burn out by puberty.  Well, nearly 10 long years, I think I'm finally there. I'm a little afraid to share this (silly, I know), but I have this irrational fear of "jinxing".  I first noticed in early December her skin looked suddenly better.  I didn't want my hopes up and kept quiet.  Every couple of weeks I would take a look.  January is usually our worst time of year, and I was stunned that her skin looked, dare I say...more normal!  It is mid March now and she still doesn't have any spots.  Others have faded now.  Her residual dryness has improved substantially to the point where she doesn't have to slather on vaseline/petroleum jelly after every shower.  It is liberating. I finally decided to post, because I remember always feeling encouraged whenever I'd read about someone who was in remission.  I would say it took a few weeks to occur.  Who knows if it will reoccur again.  I hope not, because after living with this for 10 years, a reoccurance would be unimaginable.  Brazilmom and everyone else, I haven't posted in a while, but I always read posts. Brazilmom, there is an end in sight.  You'll have to be patient and stay confident.  It has not been an easy road, but there is an end to the journey.  I think I'll still check back for a while on this site because it has been such a comfort over the years to connect with other PLC?PLEVA people.  Take care, J

Offline skindiseasesucks

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Re: Pityriasis Lichenoides Chronica
« Reply #809 on: Saturday March 20, 2010, 05:38:26 AM »
Hello Everyone,

Just like J's above post I have been abstaining from posting on the site due to "jynxing" myself as well.  I have had PLC since I was roughly 17 years old, I am now 24.  I recently posted that my dermatologist was going to put me on accutane, but in the end I decided against it.  I saw posts about using tanning salons, and I thought, why not give it a shot I don't have much to lose.  Since the end of December 2009 I have going tanning.  I think it is safe to say that, even though I am not sure if it is a permanent solution, my skin is looking 600 times better than it did in December!  Honestly, I have noticed throughout the years that the break outs were getting less, but most definitely not completely gone, and I had gotten used to wearing long sleeve shirts and pants year round.  I feel this summer may be different because for the first time in YEARS I was able to wear a 3/4 sleeve shirt to work and not feel self-conscious!  I am extremely happy, words cannot explain even though it may sound vain I apologize.  Anyway, in regards to the disease, my personal opinion is that PLC does in fact wear itself out, but it seems to me that light therapy wears it out faster.  Initially when I began tanning I was out of control itchy, and I was still having small break outs here and there, very minimal to what I was used to!  I thought the itching would not go away, but I was beginning to see results so I stuck it out.  I believe after about a month and a half the itching subsided and now going to the tanning salon is almost enjoyable.  I began with 10 minute sessions twice a week, then went to 12 minute sessions 3 times a week, then went to 15 minute sessions 3 times a week, and now I am at 15 minute sessions twice a week.  I am hoping to get down to once a week eventually and then stop going for good one day!  It also seems that the spots are leaving in somewhat the order that they came from what I remember.  I do have a lot of hypopigmentation (I believe that is what it is called, I am referring to discolored white spots were the PLC spots were), but it seems to fade little by little.  I am definitely ready to deal with the spots if they come back, but for now I hope this helps someone, and if I ever see complete resolution I will most definitely post!  Good luck and best wishes to everyone!   -T

Offline emmamae

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Re: Pityriasis Lichenoides Chronica
« Reply #810 on: Monday March 22, 2010, 10:50:47 PM »
J and T, very happy to hear the GREAT NEWS! T when the pleva was leaving my daughters skin, it did leave in the order it came too. Please keep us posted.

 :D

Offline PLCBrazilmom

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Re: Pityriasis Lichenoides Chronica
« Reply #811 on: Tuesday March 23, 2010, 09:52:58 AM »
Dear J and SDS (skindiseasesucks, what an accurate nickname!)

Thank you so much for posting. I am so very happy for you! Reading your stories gives me hope. I am sure my daughter's body is not quite there yet but I will keep on fighting and doing everything I can to make her skin healthy again.

About a week ago we saw her doctor and we are continuing her light treatments for at least 8 more sessions. After that I don't know what's going to happen. The doctor said that the next therapeutic step would me methx but not recommended at her age and the side effects just scare the hell out of me. So I am thinking of trying an alternative therapy, either Chinese medicine or homepathy if the doctor eventually says to me that she's had too many UVB sessions and that it's not working much. I've always been a supporter of Western medicine, but hey, looks like it's no help at all for her condition.

Regarding UVB: the doctor told me that the literature suggests a lifetime cap of UVB 250 sessions. I'm afraid to use it all up while she is still young because she may need it again when she is older. Maybe it's best to be parcimonious here.  The doctor also mentioned that her initial outbreak was severe, so no guarantees about it burning off with puberty or after X or Y months. I guess I will just keep on praying and hoping.

For the past two weeks her skin is looking a little better but you know how it goes: ups and downs, one day it looks great, next day all red and sore, covered in bumps and scale. She is such a brave little girl. This year she was selected for the school's handball and soccer teams, I am hoping sports will help keep her morale high and show her that there are many important and pleasurable things in life that have nothing to do with her skin.

It's the end of summer here and she is not self-concious enough to avoid wearing shorts, which is great.

I'll keep on checking this website for support. You are all fantastic.

With my best wishes for a healthy skin to everyone

PLCBrazilmom







 

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #812 on: Tuesday March 23, 2010, 11:00:12 AM »
Brazilmum,

We lived in Boston for many years and my daughter (when we lived there) was under the care of a pediatric dermatologist in Boston Children's Hospital.  I would ask about light therapy, because it (rash) obviously was extensive.  The ped derm was always very hesitant about light therapy, never gave it to me, but just told me to let her get "ambient sun"; I think he said 15 min daily, without sunblock.  So, I never went that route, but there were times where the sun isn't enough and I just wanted something to get rid of it.  We never considered methx because it is a chemo drug and the side effects on liver, etc.   He basically told me to stay patient, be in it for long haul, expect it tot ake 5-10 years to go away and let it burn itself out with some ambient sun to help. 

Offline lkkcol2008

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Re: Pityriasis Lichenoides Chronica
« Reply #813 on: Sunday April 18, 2010, 06:45:31 PM »
Hello everyone,

This is my first post in this forum.

I have read many of your postings since about a week ago, and I find your experience very informative and useful. Thanks for sharing!

By the way, just if you might want to know, I am a Malaysian Chinese, male, age 42+, living in Malaysia and Singapore (tropical countries in Asia with a lot of sun shine). I just want to share with you my story as a "probable" PLC sufferer (my case is more of being irritating than suffering I would say).

About a week ago, I visited a skin specialist who diagnosed my skin condition as a "probable" case of PLC - the first time I have ever heard of it. After googling a bit, I found this forum where you share your experience - when or how it broke out and when it recurred, how severe it was, how long each breakout lasted, how you dealt with it etc. Now, I will share with you what happened to me.

About 2 years ago around March, I had my first outbreak or attack. It started with itchy rashes on both sides of the neck about an inch plus below the ears. Then it spread to the back of the neck below the hairline (not centre back of the neck but slightly off-centre on the sides), and then to the shoulder area joining with the neck (always on both sides, so it was strangely quite symmetrical). The rash was slightly reddish with tiny bumps (similar to goose bumps), very itchy, and it became somewhat scaly on the surface and a bit of rough skin sensation a few days later. It would become very itchy whenever I wore collared shirts as the collar would rub against the skin around my neck. The itchyness and discomfort would be exacerbated if I was sweating outdoor (due to hot weather and high humidity). The affected areas (neck and shoulder) would itch and subside a few times a day, and this would continue for a few weeks before fully going into remission. Luckily, the rashes did not look very obvious as they were only in small clusters or colonies.

A week or two into the outbreak, the rash would spread (from neck and shoulder) to the back - in the area between the shoulder blades and the armpits (again symmetrical on both sides). These affected areas would be quite large, stretching about 3 to 4 inches down from the armpits, and about 2 inches wide. About the same time, some small clusters of rashes (circular or irregular in shape) and pimple-like lesions (1 - 3mm in diameter) would also form on the chest and the back between the shoulder blades (as well as on the forearms albeit to a lesser extent), and the lesions at the back were very widespread, severe and extremely itchy therefore very irritating. There was the feeling of a tiny scale or flake on each lesion and I would scratch it. The smaller lesions bled a little due to scratching but the larger lesions, if scratched or peeled hard, would end up with craters that bled much more (these larger lesions with crusts would look a bit like chicken pox honestly). The rashes eventually would spread in large swaths to both sides of the abdomen and both sides of the lower back, plus half a dozen very itchy lesions below the belly button. The small clusters of rashes would fade almost completely after a few weeks, while the large swathes of rashes would last a month or two and leaving the skin with a dry and darkened complexion. The lesions would leave behind dark spots that would not fade away until after several months later.

About 3 to 4 weeks into the outbreak, the lesions would spread to the thighs (with over a dozen of lesions on each thigh) and lower legs (lesser in extent). Occasionally, one or two lessions were found on the scalp, and they were itchy.

In between, there was the occasional outbreak of another kind when itchy and scratched - large area of bumps (patches of raised skin, flat on top), while some was just a small round spot that looked like a mosquito bite.

Somethimes, it would be itchy on the knuckles, lower legs (near to the ankles).

During the outbreak, my skin was dryer than usual, and there was constipation and the sensation of "heat" in my body. I was also peeing much more frequently during the night.

After 3 to 4 months, the itchiness was finally gone and the dark spots gradually faded away (some spots never faded off completely) and the skin condition returned to normal (no more dry). There was no more constipation and "heat" sensation in my body, and less peeing during the night. During the whole episode, my appetite was normal and I wasn't feeling tired or sick except it was really irritating when it was itchy. Just as what everyone in this forum is saying, it rarely breakout in the face as in my case. I was not covering up my arms or legs as the rashes or lesions there were not very extensive thus not too unsightly (they were most severe and looked really ugly on my back when it was full blown though).

On my first attack, my family doctor thought my condition was due to mite bites, or my skin was allergic to mites. The anti-histamine pills he prescribe was not that helpful for the itch therefore I did not return to him and waited it out.

About six months later, it came back in a less severe manner and I waited it out. There was no trigger that I could think off for this attack (or for that matter the first attack).

It attacked again about a year after the first outbreak, this time it was as severe as the first outbreak. The attack came a few days after I went doing some work outdoor under intense sunshine and heat for a few hours. This might be the trigger. It was gone after 2 to 3 months.

The third attack, which was mild, happened a few months later. I just waited it out. There was no obvious trigger for this attack.

The current outbreak started late February. It was severe but I felt it was slightly less severe than the first or the third outbreak. To find out why I had these attacks, I decided to see a skin specialist and that was how I found out I was a "probable" case of PLC.

The doctor took a piece of my lesion on my right thigh for a biopsy and did a blood test. The result will be known next week and I will keep you posted. In the meantime, I have been given an anti-histamine "Cetirizine 2HCl 10mg" tablets and Betamethasone cream to relieve the symptoms. I only took the pills and apply the steroid cream for just a few times, and they helped a lot. I stopped using them as the pill was a bit drowsy and the cream had side effects if over-used.

I will update again after getting the biopsy and blood test results. Sorry it this is a bit lengthy.

Offline lindadiane

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Re: Pityriasis Lichenoides Chronica
« Reply #814 on: Thursday April 22, 2010, 04:42:42 AM »
No, thanks for your details...sounds so very similar to my case but you have not had it as long as  I have. Wishing you well.

Offline elmo

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Re: Pityriasis Lichenoides Chronica
« Reply #815 on: Thursday April 29, 2010, 01:06:33 AM »
Hey,

I've been suffering from PLC for about 17 years now - Though I say suffering, but I honestly don't feel like I've suffered very much.

Recently, in the past 6 months, I've gotten bigger lesions that have, for some reason or another, accidentally gotten scratched off. They haven't bled or anything, but just become very pus-filled and irritated. They don't hurt and are not infected (I had tests done on them), but they take months at a time to heal. The first one I got was there for 4 months and eventually cleared up with IsoBetadine, a simple anti-fungal gel, but that hasn't worked on the second one. I've used about 4 different creams on it - anti-fungal, antibiotic, cortisone, you name it - and nothing seems to be working. I've seen a dermatologist about it, who just said that I should keep putting the cream on and not to worry about. I know it's probably nothing, but it's just strange.
Has anybody else ever experienced this shift or huge changes in the manifestation of their PLC? Like I said, in 17 years I haven't ever had anything like this happen.

Anyway, it's great to read other peoples' experiences and know that I am not the only one getting extremely dry skin, random itchiness and having trouble finding toiletries that don't irritate my skin.

Finally, I've read some (understandably) worried, but also worrying posts by concerned parents - I've had this consistently since I was 4 years old (I'm 21), with about a year and a half gap when I was about 15. I know that doesn't seem very optimistic, but I have led a fantastic life (and will continue to) despite this. I have never had any 'radical' treatments (just some creams to appease the symptoms and sunshine), and I'm glad. I just don't think the risks and side effects are worth it with PLC. Personally, I would discourage anybody from doing so (apart from in extreme cases), no matter how disheartening it is to see your child grow up with a problem like this. I am not a parent and I know I won't ever fully understand what you're going through until I am, but I say this as a child who grew up with PLC and turned out fine - Sure I have some self-esteem issues with showing my skin, just like any other PLC sufferer, but I would rather have that than serious health issues.

Best of luck everyone!

Offline Nick JM

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Re: Pityriasis Lichenoides Chronica
« Reply #816 on: Thursday May 06, 2010, 08:47:28 AM »
Hi All, Stumbled upon this site whilst tring to reserch PLC/PLEVA , My son had his first outbrake at 8 months , a biobsy confirmed the posibility of Pleva or PLC, im not sure which and neither are the dermatologysts to be honest.She had prescibed these crystals to be applied to his bath that somehow seem to dry it up.During his second outbrake at 11months ide taken him to a pediatrician who specialises with alergies and he too wasnt too clued up.This time round we didt use any ointments and medication prescribed as it seemed to make him uncomfortable. We let it run its course with lots of prayer and fasting. But unfortnately seem to be reapearing again at 14 months. We're now tring another dermatogyst whos quiete reputabe in the area and hoping for a miracle.Has anybody else experienced or heard of PLC in Babies?


Offline ToxicMuffin

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Re: Pityriasis Lichenoides Chronica
« Reply #817 on: Friday May 07, 2010, 12:58:40 AM »
Hi my name is Beth and im 16 years old. I have had PLC for about 2 years now, but for the first year and a half we pretty much ignored it. i went to my regular doctor and should took a biopsy and said it was cancer (i forgot the exact name of it), but said it would be better to go to a dermatologist and have one of them take a look at it. so we did and he said it would be PLC or a form of it so he took 3 biopsies of them. (all the biopsies i have gotten are punch biopsies). 3 biopsies were for 1. to see what it was 2. to confirm the first diagnosis was right and 3. if it was something bad the doctor said he would send it to the Mayo Clinic (a bigger hospital with more treatmeant etc.) so he confirmed it was a form of PLC but wasn't sure exactly what. and about a month ago he said it was for sure 100% PLC. one of the symptoms of it that I have is extreme dry skin which is mostly on my arms hips and thighs which are also the places where most of all my dots are. he tried putting me on tetracycline and some other pill (forgot the name of it) as a test to see how i reacted to it. those pills are mainly used for acne and to calm down boils and lesions in the skin which i got a bad reaction from which looked a lot like acne but wasn't. so now he told me just to get lots of sun and use Aveeno lotion with oatmeal for my dry skin (which works extremely well). what i dont really understand is why does sun help so much with this? and ive heard that Bromelain (i think thats the name) works a bit with helping to get rid of them. im due back to the derm at the end of summer to see how its been going and if nothing happens im gonna get another punch biopsy to see if its evolved into psiraisis (which my dad has and i REALLY dont want) so if any input could help? that would be great (:

most of my red dots have white flakes on top of them sometimes mostly on the bigger ones and whenever new ones are coming in i get extremely itchy until i put lotion on which would be normal for dry skin. i dont think i have very sensative skin at all and for a while i thought it was razor burn on my legs but it never made sense to have razor burn on my hips haha. i dont know if people know this (they prolly do) but for those who dont my derm said the cells that tell your immune system to stop fighting sickness/diseases dont actually do their job so its kind of like an auto-immune..your immune system working against you. i really dont get why doctors havent found a treatment to make those cells work again. but what i found out is that if your sick for a very long time your dots will eventually go away which happened to me when i had mono, but they came back again.
« Last Edit: Friday May 07, 2010, 01:09:42 AM by ToxicMuffin »

Offline galpal

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Re: Pityriasis Lichenoides Chronica
« Reply #818 on: Monday May 17, 2010, 03:28:37 PM »
Hi Everyone,

My daughter's spots are back.  I remember that I used a prescription topical antibiotic way back that (i think) helped with the really large, large lesions. She scratches them and they get even bigger.   It began with an M and I think someone on this site recommended it.  My doc has no record for some reason.  Really vague info I know. 

Chris

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #819 on: Monday May 17, 2010, 04:47:13 PM »
I had my first attack when I was about your age, and it didn't go away forever until I was in my thirties. But after years of floundering around with doctor after doctor, drug after drug, a derm finally confessed to me what the others didn't: Ordinary sunlight keeps the outbreaks at bay. Not UVB, not anything fancy, just sun. Derms don't like to say anything good about the sun, but I figure that big red ulcers are a good sign your particular skin type needs it.

Sounds like you've had some odd medical advice like me. Cancer!? And "autoimmune" is just what they say when they don't have a clue about what's causing something. And no, it won't become psoriasis. That's a different disease. And dry skin isn't a cause. Or any kind of food. They point is, the medical profession has no F-ing clue.

However, sunlight works very well for most if not all cases. In the winter, get a tanning booth. If you stop, the condition will come back. Sunlight is not a cure, but this disease can leave scars like bad chickenpox, so take it seriously.

You're a young girl and you should not have to worry about your appearance for the next 10-20 years because of this stupid disease. Get a light tan and keep it up. It doesn't usually appear on the face or hands because they are constantly exposed to sunlight. But the rest of your skin needs it. Tanning memberships are a lot cheaper than doctors, and the booths reach the areas that would be under the bathing suit, so have your parents get you one. Don't overdo it, but don't neglect it and you will be all right.

Good luck.

Hi my name is Beth and im 16 years old. I have had PLC for about 2 years now, but for the first year and a half we pretty much ignored it. i went to my regular doctor and should took a biopsy and said it was cancer (i forgot the exact name of it), but said it would be better to go to a dermatologist [...]