Author Topic: Pityriasis Lichenoides Chronica  (Read 580530 times)

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Offline elseaeff

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Re: Pityriasis Lichenoides Chronica
« Reply #500 on: Wednesday October 08, 2008, 08:43:59 PM »
Welcome to the world of we all have something else to say and do about everything!  :laugh:

I was diagnosed with PLC when I was 49, 3 years ago, and have had to go with trial and error to find a system that works for me. I use an excellent dermatologist at VCU and together we whip up ideas of what I can do to make the disease liveable.

Spring and Fall are good times for me, I can get outside in the sunlight. However, I have MS and cannot withstand temps above 80F without my central nervous system failing. So, during those times, I use a tanning BOOTH (I don't stew in other's juices) where I tan no more than 5 minutes a day. Anything more than that is overkill. Whatever you do, DO NOT ALLOW YOURSELF TO BURN! I can tell you from experience that a sunburn with PLC is the worst!

My doctor and I agreed that I try (and just finished) a 16-week cycle of zithromax, using a pre-packaged "Zmax" every other week. I really didn't see much difference.

The sun/tanning keeps my skin clear, but dry. I must use a water-based lotion on my skin (others are too heavy and clog my pores making it even more unconfortable and itchy) at all times.  My case is somewhat different than others because I am allergic to tetrecyclene and I must inject chemotherapy drugs every week. So, things that work with others, don't necessary work for me.

The itching is the worse. You don't know how often I want to get in the bath/shower and soak in hot water. Unfortunately that is one of the worse things to do, drying your skin something terrible. Always take a warm shower or bath. After my shower, before drying I use baby oil gel all over (lightly) which seals the moisture into my skin. I like the lavender type, as lavender is a healing herb for the skin. Of course I use the gel after showering at night, so I can put on cotton pajamas and let it soak in all night as I sleep.

I hate having people stare at me, I haven't worn shorts in years, but I decided this year, the devil with them. I am not contagious and wasn't going to let them ruin my life because I have PLC. I started swimming at the gym again and, after many complaints from the other members, I had my doctor provide the gym with a note specifying that I am not contagious and there's nothing anyone at the gym can do now. Their problem, not mine. :D

I've read all of the data I can find about PLC and find much of it to be outdated. For instance, every article I've read states that it generally shows up in childhood around the age of 7 and the child will outgrow it at puberty. I was 49 when I got it and I guess that means I haven't reached puberty yet?

One thing that helps me tremendously is to get acrylic nails. They aren't as thin and sharp as our own nails and I can't scratch anything open.

Good luck with your endeavors to beat this mess. I've seen some really strange suggestions for cures to some really sensible ones. I think it's every one for their own -- trial and error. I found no difference with the food I eat, so I went back to my usual diet. I have read of people who have cycled out of this in just a few months, others in a few decades. I don't expect much, and I'm not disappointed.

Sorry, I know this doesn't help you much, but there aren't many here who are doctors - just lay people like you and I who are searching for an answer to something that affects each of us in a different way. Good luck in your search!

Regards,
Elseaeff

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #501 on: Wednesday October 08, 2008, 09:50:24 PM »
BLX,
  Did you have any luck at all with the tetracycline?  

None at all. Neither with diet. Sunlight. Tanning beds are just watered down sunlight, with a lot of the "bad" (good) UV removed. They do reach areas under the suit, which is good, but ordinary sunlight works best.

My opinion and experience is that as long as you don't allow yourself to burn, the harmful effects of sunlight are far outweighed by the good effects on PLEVA/PLC. Your husband's dermatologist notwithstanding. It was a dermatologist who recommended sunlight and tanning beds to me, so if you're uncomfortable with going against medical advice, get another doctor with different advice.

Tell him to have hope. Sunlight won't cure this, but it can send it into complete remission. And he'll have a nice tan.


Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #502 on: Wednesday October 08, 2008, 09:55:58 PM »
I hate having people stare at me, I haven't worn shorts in years, but I decided this year, the devil with them. I am not contagious and wasn't going to let them ruin my life because I have PLC. I started swimming at the gym again and, after many complaints from the other members, I had my doctor provide the gym with a note specifying that I am not contagious and there's nothing anyone at the gym can do now. Their problem, not mine.
Elseaeff

Good for you. People are ...

If you haven't got something nice to say...

Anyway, I'm glad the sunlight is working. It sounds like you're dealing with a lot.

Offline emmamae

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Re: Pityriasis Lichenoides Chronica
« Reply #503 on: Friday October 10, 2008, 10:28:21 PM »
Hi all, I have posted on a couple of different threads here about my little girl who was diagnosed with Pleva 7 weeks ago. I am trying to stay positive as she has been PLEVA free now for one week today. Now of course I am  walking on eggshells playing the waiting game of when is it coming back and how much will it be when it does? ( she had lesions in the hundreds) I am a complete mess whenever we do anything new as since I don't know for sure how she got this in the first place. We went to the pumpkin patch yesterday and with the hay, horses, sun etc I was freaked the whole time that something out there would trigger her pleva. We are also going to Disneyland next weekend and though I know the sun will be good for her, I am also afraid the overheating will not. Ugh. I really, really don't want this to come back.
Does anyone have any suggestions on what we can do to keep this away? I am so shocked that it is even gone now after only  6 weeks. I am thinking because she was diagnosed so early on that maybe we just got lucky? We did two rounds of zpack and three weeks of topical steroid cream. I feel so helpless all the time on how to protect her, she is only 4 and I clearly cant keep her in a plastic bubble, but I am petrified of what can trigger it again. Has anyone out there ever heard of it just plain not coming back at all? Is that possible???? Also, besides stress and heat, what other triggers have people experienced?

Offline elseaeff

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Re: Pityriasis Lichenoides Chronica
« Reply #504 on: Saturday October 11, 2008, 03:39:23 AM »
 :hi: Hello emmamae!
I'm sorry to hear that your daughter has been cursed by PLC/Pleva. The only good thing I can say is that she is young enough not to be affected by the bigotry of others who don't understand the nature of and lack of cure for this disorder.

The description for PLC says that it comes from the unknown and it waxes and wanes as it pleases. I have spoken to those here who have had it for decades, others for months. I was diagnosed at 49 and am now 52. My PLC is still cycling, staying more often than not. It affects each person differently as does solutions to controlling it.

You cannot cause it to 'happen' or 'trigger' PLC. It comes when it wants to come. Sunshine is actually good for it, but sunburn is not. Hot baths/showers is not good for it. I found that water-based creams work best for keeping my skin moisturized except when I've bathed. Before drying I use a baby oil gel to seal the moisture into my skin. I keep my skin moisturized several times a day and my derm has advised me to take as few showers/baths as possible. That doesn't mean for me to walk around stinking and dirty, just don't take one every day if I don't really need it. Allowing the skin to dry out is a sure way to cause the PLC to become worse than what it is.

Some have found success with erythromyecn (sp?) but I am allergic to it. I just finished 16 weeks of a Z-pack treatment, taking a Z-pack every other week. I really saw no difference.

Lavender oil is conforting, you can purchase it at the Body Shop or other places. The usually use grapeseed, flax oil, and several other oils as carriers for the lavender.

The doctor's 'light box' was helping, but with the cost of gas, a 90 mile round trip and $20 copay to go 5 days a week was too expensive for me. She told me that 5 minutes a day in a tanning booth would do the same, however, most states have laws against those under 15 using a tanning center. Tanning lights for the face or upper body aren't that expensive and you could purchase one of those for use at home. As small as she must be, she could get all-over tanning with a small light.

You've got to stop your worrying about everything you do - she can pick up on your worry and make her worry. As far as not wanting this to come back, forget it. It will decide when it will and won't resurface. It's important that you keep her from scratching. I have acrylic nails because they are thick and I can't scratch anything open with them. It's not gone, it's just gaining strength for the next attack. They used to say it would go away at puberty, obviously that is not the case.

I don't mean to give you bad news, but it's better than getting sugar coated lies. As I said, this condition can last weeks, months or years. I've also got Multiple Sclerosis and was sure the interferon and other drugs I must take was the culprit for my PLC. But there is not explanation for the cause, no solution to the cure. You've got to stay strong, stop fretting and let her know it's not abnormal for her to have these pustules.

Many of us would like to keep our children in a plastic bubble - one of my sons is in Afghanistan, my daughter in a terrible relationship. All we can do is love them and protect them as best we can. If she learns that this disorder is something natural for some people, she'll be able to cope with it, as you need to do.

Good luck to the both of you!

Regards,
elseaeff
 :bighug:

Offline Karen19

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Re: Pityriasis Lichenoides Chronica
« Reply #505 on: Saturday October 11, 2008, 07:26:08 PM »
I totally agree! I was diagnosed with PLEVA about 3 years ago. (I am 49 now) It has largely subsided, but still comes and goes whenever it feels like it, with no rhyme or reason. My oldest son has had severe eczema his entire life (he is now 25) and if I had stopped him doing things which made his skin worse he would have missed out on a lot of living. He has learned to take the rough with 1the smooth. One thing I do know....Worrying about what might happen will only stress you out and that will definitely make things worse

Offline emmamae

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Re: Pityriasis Lichenoides Chronica
« Reply #506 on: Sunday October 12, 2008, 01:30:32 AM »
Yes, I agree with your comments on not stressing and logically I realize this, however, not easy to do sometimes, as I am still trying to wrap my head around the fact that she even has PLEVA. As I am sure how it happens with everyone, it just came out of nowhere. Her dermatologist seems to think that typically with younger children a lot of times it just doesn't come back and it burns itself out... sooo this has left me with the thought of how can I make sure that happens. The other thing that I have read with most people when it does come back, it is never as bad as the first episode. Is this the same in your case as well? I feel it would be much easier to handle if it wasn't in the hundreds. I feel so bad for her, I just don't want her to go through grade school/high school with this.  Thank you for your responses, I feel for everyone going through anything like this, and my heart goes out to all.

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #507 on: Sunday October 12, 2008, 05:16:11 PM »
Karen19 and elseaff are telling you what we sufferers have learned through many hard years of experience and investigation: Doctors don't know squat about PLEVA/PLC ... they don't know the cause, prognosis, or any effective treatment other than UV light. What all of us here have learned is that the disease gets better and worse, strikes any age, lasts as long as it wants to, and changes form ... or not ... over time. We're lucky they can even diagnose it with a biopsy.

This disease is sufficiently rare that dermatologists don't see more than a case every 3-6 months. It is rare enough that drug companies have little interest in pursuing a cure. It is non-lethal, so no one is ever going to pursue a cure with public money. It is socially awkward enough that no one is ever going to organize a "Walk for PLEVA/PLC."

What you WILL get is doctors who want to experiment with your daughter with diet and drugs, doctors who look it up in a textbook and make uninformed pronouncements, and doctors who warn you away from the ONLY proven and effective treatment: sunlight.

The only GOOD news is that sunlight works. If you want some insurance against a relapse for your daughter, get her about 5 minutes of all-over UV light a day, as close to the natural spectrum of the sun as possible. If that doesn't work, up the UV dose. In 20 years I was only in complete remission when I had a nice tan. But don't believe us. Find a specialist in this disease (it is possible if you're near a large city) and he or she will tell you the same thing. I finally did.


Offline emmamae

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Re: Pityriasis Lichenoides Chronica
« Reply #508 on: Sunday October 12, 2008, 08:56:45 PM »
Luckily, our doctor is a pediatric dermatologist at UCSF who happens to specialize in PLEVA. She currently alone has 50 PLC/PLEVA patients right now under her care. She has been dealing with PLEVA for 25 years. She did mention doing light therapy with our daughter if needed. So far other than the natural sun she hasn't needed it. It would probably be our next step if this comes back as strong as her first episode. I am still hoping for a miracle that this wont come back or not come back as strong as before. Her doctor was surprised to see it gone after only 6 weeks so who knows. I guess you could say I am cautiously optimistic. We live in northern CA and have been able to get her out almost daily in the sun. I just get concerned with her overheating as it seems this in the past would aggravate it a bit. This is all still so new to me and yes it does seem trial and error is the only path to go and every individual responds so different to any treatment. I think it sucks that doctors don't do more research as it seems just from this board alone there are plenty enough people out there with this to warrant some research. I also think it sucks that apart from our dermatologist  no one else had a clue as to what she had. Anyways I am everyday just getting more use to this and trying to learn all I can.  Which is why I am so thankful to find this board and be able to talk to people who actually have this and I can learn from others. When you say you were in complete remission, does that mean you still are? Or does it mean as soon as you stop getting out in the sun does it come right back? How long have you had it? If and when it does come back for you, is it 100's of lesions or a few?

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #509 on: Monday October 13, 2008, 02:16:44 AM »
All I can testify to is my own experience. I had PLEVA/PLC of varying severity (10-200 lesions, spots to large ulcers) from age 16 until about age 36 (hard to tell because I started consistent tanning booth therapy about age 32, on the recommendation of a dermatologist, after which I had no more spots until the light therapy was interrupted by the birth of my first child at 36, and it never came back).

Overheating can aggravate the ulcers, but there's no evidence that it causes them. Do not avoid the sun on this basis.

By complete remission I mean that getting a lot of sun while working outdoors in the Florida summer at age 20 sent it into complete remission for months. We are talking a heavy brown tan. (And yes, there was some measure of "clothing optional" activities that summer.) It didn't come back for months after I went back to college.

There is very little useful to "learn" about this disease, except that it responds well to sunlight. Sunlight doesn't cure it, but it controls it very well. Why dermatologists don't use UV therapy as a first line treatment is beyond me. We are not talking about a lot of exposure here, just a few minutes in a tanning booth every day. Most of the problems of UV exposure come from heavy tanning or sunburn. Yes, I know the "no safe limit" arguments, but PLEVA/PLC is a nasty, uncomfortable, disfiguring disease that leaves scars like bad chickenpox. That's worth the small theoretical downside of sunlight IMHO.


Offline galpal

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Re: Pityriasis Lichenoides Chronica
« Reply #510 on: Monday October 13, 2008, 06:30:12 PM »
Hi Emmamae,

My daughter's PLEVA started when she was 6.  She is 8 now and still has it.  It is so much better though.  I obsessed over it when she had lesions in the hundreds so I tried fish oil, antibiotics, acidiphillous, vit D, antioxidants, sea salt from the dead sea, special lotions, Goji juice....You get the idea.  None worked.  It went away completely during bathing suit season (except under her suit) so I put two and two together and stopped everything else, including antibiotics.  We use 50 SPF during peak hours.  She is Irish fair so I'm very careful and allow 10 minutes or so of non peak sun with no sunscreen.  The effects of the sun lasted into January last winter and then the PLEVA returned. Not nearly as bad. So this winter I will look into light therapy.  Hopefully, a minimal amount will do the trick.

Good Luck. 

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #511 on: Monday October 13, 2008, 07:40:07 PM »
Hey galpal, that's interesting. I've always wondered if the very fair-skinned didn't have it easier in the tanning booth than us type 4 tanners. While I am fair-haired and blue-eyed, I tan like a piece of mahogany. Once tan, my skin seems to filter sunlight better than sunblock. I used to spend 10-20 minutes in the booth to get the desired effect. It would have been nice to spend only a few minutes instead. One thing to be aware of: tanning booths do not have as much UV-B as natural sunlight. You'll have to experiment with exposure.


Offline elseaeff

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Re: Pityriasis Lichenoides Chronica
« Reply #512 on: Tuesday October 14, 2008, 03:25:49 AM »
Dear BLX42,

I don't think that it's true about the tanning booths being less powerful than the booths. The maximum time for a tanning bed at my center is 30 minutes, but only 20 minutes in the booth. Then there's the rocket booth that has a 5 min. maximum!

I guess it depends on the tanning center and the equipment they offer!

Regards,
Elseaeff :cf:

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #513 on: Tuesday October 14, 2008, 06:51:33 PM »
I looked it up. It depends on the bed, with home beds having more a little more UVB spectrum than tanning salons (due to the construction of the lamps). I kept seeing that home and commercial beds have 3 to 8 times more UVA in the mix than natural sunlight, whatever that means. After all, natural sunlight ... at what time of day, under what atmospheric conditions, at what elevation, at what time of year? Anyway, we both know the tanning salons work, and they are what my good derm recommended to me (not the narrow-band dermatologist office variety). I think we can all agree that there is something in the UV light spectrum that PLEVA/PLC just hates ... and our skin needs ... regardless of the source.

One caution to newbies: Tanning beds and booths emit very powerful UV light (about 100x the sun) so you don't have to spend hours in them. Because of this, you need proper eye protection, since it will go right through your eyelids. Get good goggles.


Offline gojoepa

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Re: Pityriasis Lichenoides Chronica
« Reply #514 on: Tuesday October 14, 2008, 10:49:41 PM »
Folks,

I have had PLEVA/PLC for 3 years.  The first outbreak was outrageous (almost whole body) but then it subsided and stubbornly attacked my legs only and that is where it has stayed.  Anyhow, my great Derm suggested daily sunlight.  Since I couldn't sunbathe daily I bought a Dermalight handheld unit - the type people often use for Psoriasis that affects the scalp.  Since I only had about 20 spots, I could just blast the light on the spots every day and it only took about 10 minutes total.  It really did help alot.  When summer came I was lucky as I could go swimming in the Meditteranean (I lived in Italy the past 4 years).  The combo of the Dermalight and the swimming almost totally cleared it up. 

The point is, the medical sunlight devices you can buy will deliver the healing UVB rays only (and not the nasty UVA rays) and you can buy them in various sizes to treat large or small areas.  This means you can avoid the misery of tanning beds, the high cost of going to doctors' offices for light treatments; you can treat yourself at home in privacy, and you can also avoid tanning your whole person when you only want to treat small areas.  Google "Psoriasis UBV" and you will find many links to sites that sell these home light treatments.  Best wishes to all of you...Pleva is the pits!




Offline emmamae

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Re: Pityriasis Lichenoides Chronica
« Reply #515 on: Wednesday October 15, 2008, 12:30:43 AM »
Thank you to all for all the advice. My daughter is very fair skinned Irish/Scottish and Dutch. She tans even with sunscreen on. We have been getting her out every day. However with winter coming I don't know what we will do. Her doctor did mention to us that she would  use  Light box therapy if it ever got as bad as it was, but I don't know if she will let us do that unless it is in the hundreds.There are no tanning bed places out here that will allow me to bring in my 4 year old. I am happy to hear that for most people when they come back it doesn't seem to be as bad as the first episode. My daughter had it on her neck to her knees, groin included.

Offline Tina45

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Re: Pityriasis Lichenoides Chronica
« Reply #516 on: Monday October 27, 2008, 03:04:27 AM »
Hello everyone,

First, let me say I am new to this site, and new to PLC. Second, I am so glad to have found all of you. I wish I had found all this information about a month ago.
I didn't completely understand the information I was finding. My dermatologist had no information just prescribed steriods and antibiotic. I thought that I had a weak immune system the reason for the PLC. So what did I do? I went and got some supliments to boost my immune system! :doh:(I can see many of you cringe already). It wasn't untill yesterday when I fell apon the information Bunny posted #383? and the subsiquent posts that followed that I undersood my immune system isnt weak, it's already in overdrive! So, I am sure you can figure out what happened... I am busting out all over. I am itching like crazy! My spots aren't just angry looking they are to the point of being insane! :evil: I just about cried when I found the information Bunny and the rest of you posted. Then I started laughing because I was so happy to know there are some answers to my questions. I was very interested in the light therapy. I live in Northern California and the weather has been pretty nice so far. My problem is I am at work indoors during the day and get little or no sunlight (especially where I REALLY need it). Looks like a tanning salon is my best bet. I was just wondering if I should contact the derm and see if he will give me another round of aniboitics or try the light therapy first? I hated taking the steriods as they really effected my memory and such. I was just diagnosed about 2 months ago(but have had this since about April) and did the first round then. Is it too early to do another round of antibiotics & steroids this soon?
Thank you all so much for taking the time to share your stories and information. You are all a blessing for someone like me. You all have touched so many lives like mine who thought they were lost at sea. I have found a light house!

Tina45
 

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #517 on: Monday October 27, 2008, 06:25:02 PM »
Sorry to hear you have PLEVA/PLC Tina.

My recommendation, do the light therapy. It works. The steroids and antibiotics don't work, although they may seem to work sometimes because outbreaks come and go. Diet modification doesn't work. UV light works. Use good judgment with light therapy, of course.

Bunny has a different disease from PLC. She has presented some theories here, but they are just theories with no hard evidence. Here is a fact: The doctors do not know what causes PLEVA/PLC. They don't know if it will last 2 months or 20 years. There is no good research on a cause or cure. The only significant research finding is that UV light controls the outbreaks in almost every case. You have to keep the UV treatments up or the spots will come back. Be prepared to have an all-over, year-round tan.

Your doctor can look this up if he likes. I am assuming he has done a biopsy to confirm the diagnosis.

Good luck. There are worse things than having a nice tan.

Offline Samuel9817

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Re: Pityriasis Lichenoides Chronica
« Reply #518 on: Wednesday October 29, 2008, 05:35:58 PM »
Hi guys it's me again,

My PLC/PLEVA lessions have finally started to fade out a bit. I started doing the whole herbal tea thing (Sarsaparilla and Burdock) along with tetracycline. I still get new outbreaks but not a much as before. It's starting to get cold here in NY and I think it's gonna come fast and furious at me, during the summer it was practically gone.

A friend of mine told me about Boryx anyone ever triend this, did it work ??

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #519 on: Wednesday October 29, 2008, 06:23:59 PM »
Hi guys it's me again,

My PLC/PLEVA lessions have finally started to fade out a bit. I started doing the whole herbal tea thing (Sarsaparilla and Burdock) along with tetracycline. I still get new outbreaks but not a much as before. It's starting to get cold here in NY and I think it's gonna come fast and furious at me, during the summer it was practically gone.

A friend of mine told me about Boryx anyone ever triend this, did it work ??

Do you mean Doryx? This is a type of delayed-release doxycycline. It has the same photosensitivity warning as tetracycline ... not a terribly good thing when UV light is the most effective treatment for PLC/PLEVA. (I was given all these antibiotics back in the late 1960s with no success.) Have you tried UV?