Author Topic: Pityriasis Lichenoides Chronica  (Read 553342 times)

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Offline CalamityJane

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Re: Pityriasis Lichenoides Chronica
« Reply #520 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
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Offline elseaeff

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Re: Pityriasis Lichenoides Chronica
« Reply #521 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

Offline CalamityJane

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Re: Pityriasis Lichenoides Chronica
« Reply #522 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
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Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #523 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?

Offline CalamityJane

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Re: Pityriasis Lichenoides Chronica
« Reply #524 on: Thursday October 30, 2008, 08:17:31 PM »
Quote
Jane, for the record, what skin disease do you have?

PPP.

Jane
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Offline galpal

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Re: Pityriasis Lichenoides Chronica
« Reply #525 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. 

Offline mompres2008

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Re: Pityriasis Lichenoides Chronica
« Reply #526 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)

Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #527 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

Offline emmamae

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Re: Pityriasis Lichenoides Chronica
« Reply #528 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.....

Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #529 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

Offline emmamae

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Re: Pityriasis Lichenoides Chronica
« Reply #530 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?

Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #531 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?

Offline emmamae

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Re: Pityriasis Lichenoides Chronica
« Reply #532 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?

Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #533 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

Offline Dianaoon

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Re: Pityriasis Lichenoides Chronica
« Reply #534 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

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #535 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.


Offline TheLadyB

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Re: Pityriasis Lichenoides Chronica
« Reply #536 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!!!!

Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #537 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

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #538 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

Offline emmamae

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Re: Pityriasis Lichenoides Chronica
« Reply #539 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?