Author Topic: Pityriasis Lichenoides Chronica  (Read 576864 times)

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Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #540 on: Thursday November 13, 2008, 11:39:27 AM »
I found the pregnancy thing interesting.  I read an article way back in Sc. American that during pregnancy, since a woman is carrying a fetus w/ 50% of the DNA not being hers, she produces something that stops her body from rejecting it.  (Researches were looking into this as a potential option for people who have had organ transplants).  I don't remember any details, etc.. but they did mention diseases being suppressed by pregnancy.  I didn't see PLC/PLEVA there, but I did see MS.  I know practically nothing about MS except that it is autoimmune, and the myelin sheath on the nerve is destroyed, I think. Obviously, we all know PLC/PLEVA is autoimmune. 

I agree w/ BLX that we, as humans, see patterns in everything.  That's what makes us so smart, I guess.  Maybe there is a connection, maybe not.  I wish I had the answers. 

PS If any ladies w/ PLC/PLEVA are out there, who are on birth control, I'd be interested to hear if it had an effect. 

J

Offline nomorepr

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Re: Pityriasis Lichenoides Chronica
« Reply #541 on: Friday November 14, 2008, 01:48:05 AM »
Is PLEVA/PLC related to pityriasis rosea? (Since they all have the "pityriasis" part in common.)

I first had pityriasis rosea in 2005. The spots resolved in 3-4 months, in 2 waves. I was told I would not get it again.

It's now 2008, and I've been suffering pityriasis rosea AGAIN for over 4 months. I don't know why my spots aren't clearing, but they seem to be related to the antiviral I'm taking (Valtrex)--which, oddly, is supposed to suppress the rash not cause it.

Since you aren't supposed to get pr twice, might this be something else? Is pr a precursor to PLEVA/PLC? Thanks for any input.

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #542 on: Friday November 14, 2008, 12:22:31 PM »
Is PLEVA/PLC related to pityriasis rosea? (Since they all have the "pityriasis" part in common.)

I first had pityriasis rosea in 2005. The spots resolved in 3-4 months, in 2 waves. I was told I would not get it again.

It's now 2008, and I've been suffering pityriasis rosea AGAIN for over 4 months. I don't know why my spots aren't clearing, but they seem to be related to the antiviral I'm taking (Valtrex)--which, oddly, is supposed to suppress the rash not cause it.

Since you aren't supposed to get pr twice, might this be something else? Is pr a precursor to PLEVA/PLC? Thanks for any input.

"pityriasis" means "dry and flaky"

As far as anyone knows, PR is not related to PLEVA/PLC, except that they are both dry and flaky and on the skin.


Offline nomorepr

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Re: Pityriasis Lichenoides Chronica
« Reply #543 on: Saturday November 15, 2008, 05:57:43 PM »
Thank you very much. I had thought pr for an extended period of time (4 months and new pustules still forming qualifies) would turn into plc. They sure do look alike. Not all my spots are the same, and some look more reminiscent of plc than pr.

Does everyone with plc get the "frosted glass" appearance? I have yellow, not clear, frosted glass when the pustules break.

Is there any evidence of a viral etiology for plc? I have seen a few people on this board have success with acyclovir (I am taking a form of acyclovir called valacyclovir). Unfortunately, valacyclovir is what triggered my pr again and again, and switching to acyclovir or penciclovir did not help. Even worse, valacyclovir is not a med that I can just quit taking.

Offline Samuel9817

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Re: Pityriasis Lichenoides Chronica
« Reply #544 on: Saturday November 15, 2008, 10:55:01 PM »
Hi BLX - I can't find the tetracycline drug Doryx -- does it have another name? Perhaps depends which country one lives in?

Jane



Hi Jane, my Dermatologist prescribed Doryx for me and it seems to be working fine. My spots have started to disappear and the itching has completely stopped so I'm hopeful. It's not for everyone, he says it can cause upset stomach and lots of flu like symptoms.

Offline CalamityJane

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Re: Pityriasis Lichenoides Chronica
« Reply #545 on: Monday November 17, 2008, 02:09:14 AM »
Hi there, what doseage was prescribed, and for how long a period of time? Thanks. Doxy put my PPP into remission for 18 months.....but sadly, but not unexpected, it's back! :'(

Jane
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Offline KK

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Re: Pityriasis Lichenoides Chronica
« Reply #546 on: Monday November 17, 2008, 05:22:07 PM »
Hi. I've not posted for a long time here & don't even know if I'm going about it the right way but, here goes.  I was diagnosed with Pleva last March (after my initial rash began last September), which seems to have morphed into PLC. It's now been over a year since it began.  Last fall my body was covered all over with bleeding spots that itched horribly and I was diagnosed through a biopsy.  Now that it's PLC, my rash seems different than in the past.  It looks more like a regular allergic rash and kind of ebbs and flows, mostly on my neck, chest, torso & arms.  Somtimes my hip bones as well.  The rash doesn't seem as bad on my legs.  Has anyone else noticed that the appearance of their rash has changed over time.  My dermotologist noticed it doesn't look as clear cut anymore, but we are going on the assumption that it's the PLC.  I was, and am still, wildly itchy esp. at night.  I do have trouble sleeping.  Any help?

Offline bhmars

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Re: Pityriasis Lichenoides Chronica
« Reply #547 on: Tuesday November 18, 2008, 12:01:22 AM »
Hi Everyone,
I haven't posted in a while but nothing has really changed for me.  I did start going to a tanning bed on a regular basis and I am clearing up and I have not had another outbreak!  Lets hope this continues :) Tanning does seem to be leaving dark pigmented areas where I had spots but I don't really care because it is clearing up!  I figure the dark spots might fade over time and it doesn't bother me.  The pregnancy thing is interesting because as I had said before, I got PLC 3 weeks after my baby was born.  It started like itchy bug bites all over my forearms.  I have always wondered if hormones have something to do with it because it was so soon after my baby was born and I was breast feeding.  I also have to note that it seems like autoimmune diseases run in my family, my sister has an auto immune disease.  Her autoimmune diesease manifested itself just 3 weeks in to her pregnancy. 

Offline lindadiane

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Re: Pityriasis Lichenoides Chronica
« Reply #548 on: Tuesday November 18, 2008, 12:29:07 AM »
Hi All:

I've been super busy and unable to post. I think this is related to stress and hormones and genetics. I broke out just after I went off birth control pills which I was on for perimenopause symptoms. My bumps get red and very itchy right before my period. In fact, I can tell when it's coming because my skin changes. My husband is convinced it will be gone once I go into menopause (which is taking forever). I have had this 6 years and I am 52. I just found out my cousin has MS and my sister has psoriasis. So there are immune diseases in my family. I am also allergic to penicillin. I was sleep deprived before I broke out. I thought maybe it had to do with travel...we had been to Europe and Caribbean. My skin gets worse with stress and little sleep. I was getting light treatments with my derm which was helping but decided to take your advice and hit the tanning salon every day. My skin does seem clearer, no new breakouts and I am much less itchy. Had to stop this week because of a nasty ingrown toenail that got infected. So I will keep you posted on my progress. In the meantime where does everyone live? I'm in Los Angeles.

Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #549 on: Tuesday November 18, 2008, 12:43:21 AM »
Hi All:

I've been super busy and unable to post. I think this is related to stress and hormones and genetics. I broke out just after I went off birth control pills which I was on for perimenopause symptoms. My bumps get red and very itchy right before my period. In fact, I can tell when it's coming because my skin changes. My husband is convinced it will be gone once I go into menopause (which is taking forever). I have had this 6 years and I am 52. I just found out my cousin has MS and my sister has psoriasis. So there are immune diseases in my family. I am also allergic to penicillin. I was sleep deprived before I broke out. I thought maybe it had to do with travel...we had been to Europe and Caribbean. My skin gets worse with stress and little sleep. I was getting light treatments with my derm which was helping but decided to take your advice and hit the tanning salon every day. My skin does seem clearer, no new breakouts and I am much less itchy. Had to stop this week because of a nasty ingrown toenail that got infected. So I will keep you posted on my progress. In the meantime where does everyone live? I'm in Los Angeles.

Hey Linda,

So why don't you just stay on the contraceptive pills?

I too am allergicto Penicllin! Maybe that had something to do with it.

So you're thinking it should go away when you go into menopause?

What about with men, since men keep secreting sperm to their late 90's even. I wonder what the oldest case of PLC is reported.

Regards,
PLC4ME

Offline emmamae

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Re: Pityriasis Lichenoides Chronica
« Reply #550 on: Thursday November 20, 2008, 01:00:13 AM »
I know this is going to sound irrational.... but part of me thinks maybe my daughter picked up the virus when she was at gymnastics, just because of the timing and the fact that she had scratches that she was picking at with dirty gymnastics hands where 1,000's  of kids had been that day. I have not brought her back since she was diagnosed with PLEVA. At first I didn't bring her back because her body was so covered in spots and they wear those little leotards and  I thought children might make fun of her or make comments. Then I just never went back as I was never sure when and where she got this from...Now she is being invited to go back with some friends and she has been pleva free for over 7 weeks.
Has anyone out there ever thought that going to certain places may bring it back? I know it sounds crazy and paranoid. but I have a sick feeling in my stomach about it. If it is a virus and that same virus is still lurking around this place, can she get it again? Or can any virus she gets cause this as to how her body reacts to the virus? This sounds nuts I know, but I cant help it.

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #551 on: Thursday November 20, 2008, 02:29:50 PM »
Hi. I've not posted for a long time here & don't even know if I'm going about it the right way but, here goes.  I was diagnosed with Pleva last March (after my initial rash began last September), which seems to have morphed into PLC. It's now been over a year since it began.  Last fall my body was covered all over with bleeding spots that itched horribly and I was diagnosed through a biopsy.  Now that it's PLC, my rash seems different than in the past.  It looks more like a regular allergic rash and kind of ebbs and flows, mostly on my neck, chest, torso & arms.  Somtimes my hip bones as well.  The rash doesn't seem as bad on my legs.  Has anyone else noticed that the appearance of their rash has changed over time.  My dermotologist noticed it doesn't look as clear cut anymore, but we are going on the assumption that it's the PLC.  I was, and am still, wildly itchy esp. at night.  I do have trouble sleeping.  Any help?

Mine varied considerably over 20 years. What you are experiencing is very typical of PLEVA/PLC.

The only thing that worked for me was sunlight (and tanning salons). This cleared the spots completely. If you are not trying UV light consistently, then I hope you do. This will relieve your symptoms.


Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #552 on: Thursday November 20, 2008, 02:43:15 PM »
I know this is going to sound irrational.... but part of me thinks maybe my daughter picked up the virus when she was at gymnastics, just because of the timing and the fact that she had scratches that she was picking at with dirty gymnastics hands where 1,000's  of kids had been that day. I have not brought her back since she was diagnosed with PLEVA. At first I didn't bring her back because her body was so covered in spots and they wear those little leotards and  I thought children might make fun of her or make comments. Then I just never went back as I was never sure when and where she got this from...Now she is being invited to go back with some friends and she has been pleva free for over 7 weeks.
Has anyone out there ever thought that going to certain places may bring it back? I know it sounds crazy and paranoid. but I have a sick feeling in my stomach about it. If it is a virus and that same virus is still lurking around this place, can she get it again? Or can any virus she gets cause this as to how her body reacts to the virus? This sounds nuts I know, but I cant help it.

Nobody knows what causes PLEVA/PLC. There are three theories: It is caused by an infectious agent (virus, fungus, etc.); it is caused by an immune system problem; or it is caused by an immune response to an infectious agent. That pretty much covers everything except diet and space aliens.

You are right. It is "nuts" to assume she "caught" it from gymnastics. This disease can persist over decades, during which many lifestyle changes occur. It one of these initial conditions (like gymnastics) "caused" PLEVA/PLC, then it wouldn't persist.

The best advice I can give you is to make sure your daughter doesn't get some sort of emotional trauma from this disease. If she is PLEVA-free, why shouldn't she get healthy exercise at gymnastics? If you are worried about recurrences, and you should be, make sure her skin is getting some consistent UV light, which is known to suppress outbreaks.

Offline emmamae

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Re: Pityriasis Lichenoides Chronica
« Reply #553 on: Thursday November 20, 2008, 07:14:24 PM »
Hi, no my daughter will not have any emotional trauma from this as it didn't even bother her one bit to have the spots, they didn't even itch her. The only thing we even discussed was her biopsy and her picking at the spots, which have been non issue for the past 7 weeks. My own fears, I keep to myself and do not put that on her. She does get outside daily, either at the park or at preschool, although sun is starting to get hard to come by.

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #554 on: Friday November 21, 2008, 12:43:36 PM »
No criticism intended. I'm glad to hear she didn't get self-conscious about the spots. However, as a parent, I know that kids pick up on their parent's fears no matter how we try to hide them.

I would let her go to gymnastics. We live in a sea of germs and viruses and fungi. We have immune systems to handle them, and generally, those immune systems work pretty well. Also, exercise is healthy. It keeps the body in balance. The trade-off of exercise versus possible exposure to germs is so heavily weighted in favor of exercise that it's no contest. If she were my daughter, I would try to see that she gets some mild UV exposure on a regular basis. PLEVA/PLC tends to recur in winter. But that is just me. You are the parent.

Offline lindadiane

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Re: Pityriasis Lichenoides Chronica
« Reply #555 on: Friday November 21, 2008, 07:17:49 PM »
PLC for me: I did not want to stay on the pills any longer. I do not think it’s healthy. I thought about going back on but my B/P is borderline. It goes up at the doctor’s office and is fine at home (white coat hypertension) so they do not want to prescribe the pills. I do think it will go away with menopause…I am hoping!!

Emmame: That is irrational. It is NOT contagious or everyone would have it. No one in my family has it. It’s an auto immune or inflammatory condition they believe is triggered.

Is there anyone else allergic to penicillin?

Offline ickyspots

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Re: Pityriasis Lichenoides Chronica
« Reply #556 on: Friday November 21, 2008, 11:15:43 PM »
Hi all! 
So glad I found this thread here.  I didn't quite make it through all 29 pages ( :P) but it's nice to see a group of people who are knowledgeable.

I was dx'd with PR about 4 weeks ago after 3 weeks of having spots.  Doc told me 6 - 8 weeks and it would be gone or at least mostly healed.  I am in week 7 or 8 since the first spots appeared and I'm convinced it's not PR but PLC. I have another appt to see him and hopefully he'll give me a referral to a derm to get a dx or some further advice.  I don't like to self-dx off the 'net but in all the descriptions and images I've looked at my lesions are far more consistent with PLC than PR.  My shins and calves are the absolute worst (quite large and very red, but no bleeding or pussiness).  I have it on my arms and torso and feet as well.  Those spots are smaller and less red but still won't see to fade passed a pink color. 

I did go to a couple tanning sessions and didn't see much difference but that was when I first got the spots and they were still coming.  I gave up on it early (as I said I only went twice) but I'm thinking I'll return the first of the week and keep with it to see what difference it makes. 

I am 35 and I first noticed two spots (one on my arm and one on my shin) at the same time I was on penicillin for strep throat at the first of October. 

I have noticed that my overall skin quality (even where I don't have spots) is very, very dry which is not something I've ever experienced before.  I have used pure coconut oil to help with the dryness.  I experimented with some on my worst leg last night and this morning those bumps on my legs that were starting to dry were completely scaled over and when the scale is peeled of it is flat (not raised at all) but the spot is still very red.  Does that sound like what people have experienced??

I have only been showering in lukewarm water and try not to everyday.  I have been using goat's milk soap.

I live in Atlantic Canada and it is definately winter here (supposed to get a snowstorm tonight :D), so natural sunlight is out and our house is heated with wood, so the air is quite dry.  I am so glad I have this at this time of the year and I'm hoping I can get it under control.  Of course, I guess I should still be waiting to hear what my doc says next week and if I get to see a derm, but I am pretty sure it's PLC and not PR.

So here are my questions if anyone has made it this far and cares to answer:

1.  How long in the tanning booth at a time and how long before people saw results?

2.  Has anyone used pure coconut oil and what were the results?  maybe I shouldn't be using it?

3.  Has anyone had any results with vitamins or mineral treatments?


I think I am kind of in shock that I have this (whatever it may be), and have been wavering between being hopeful that I can get rid of it, happy that it's presented itself at this time of the year and depressed that it is so damn unsightly!!  I feel so bad reading about the little kids and teens that have this.

Thanks so much!

T.
« Last Edit: Saturday November 22, 2008, 12:16:40 AM by ickyspots »

Offline emmamae

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Re: Pityriasis Lichenoides Chronica
« Reply #557 on: Saturday November 22, 2008, 02:37:17 AM »
My daughter went to Gymnastics yesterday and had a blast. I am very happy she went. She still does Ballet, but we had her out of Gymnastics for awhile, as you have all read.  Yes I do know how kids can pick up on our emotions as  my irrational thoughts were passed down to me from my Mom, I do try extra hard to really, really keep these fears to myself as much as any parent does when dealing with something like this.  Anyway, she had fun, she  had her derm apt today and is looking very good. We are keeping our fingers crossed all stays well with her.
Ickyspots, my daughter had dry skin in some places as well, although hers was mostly from the steroid cream she had to use. I just used Aquaphor on her everynight and it worked very well for her skin. I use this on myself and my youngest daughter as well as we both have Eczema and this is the only thing that doesn't dry or irritate our skin. Also for her baths, very lukewarm, and when she had spots we did everything we could to make sure she didn't over heat as when she did, it seemed to flare up a bit.
Lindadiane, my daughter is not allergic to Penicillin but she does have a peanut allergy. My youngest daughter who does not have PLEVA but does have Eczema is allergic to Penicillin. ugh.



Offline galpal

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Re: Pityriasis Lichenoides Chronica
« Reply #558 on: Friday December 12, 2008, 05:01:27 AM »
Hi Emma,

I pulled my daughter from gymnastics also.  She was getting a lot of stares and everyone thought she had chicken pox...She is back at it now but I do think her immune system needed a good break when the spots were at their worse.  Her classroom at school had severe outbreaks of strep.  I still think her immune system was compromised/confused and she probably had strep but I didn't know it.  Your post brought it all back.  It has been two years since I went to the Docs the week before Christmas and...
She has NO spots right now.  I gave her a lot of sun in aug/sept and it does penetrate many layers of skin.  Last winter she was mostly spot free until late Jan, I think.  So far, she is even better this winter.
Good Luck Everyone...

Offline emmamae

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Re: Pityriasis Lichenoides Chronica
« Reply #559 on: Sunday December 14, 2008, 06:40:55 PM »
Hi Galpal, thank you for your response, it is nice to hear from people who understand and have been there. My daughter has been spot free for a couple of months now as well. I am keeping my fingers crossed as the cold weather is not allowing us much sun exposure these days.

Has your Daughter had any vaccines at all since she was diagnosed with PLEVA? And if she did, did it seem to affect her PLEVA at all? I need to know more about autoimmune and vaccines etc. My daughter is going to be due for boosters soon and her derm said while she has spots she absolutely canNOT have vaccines. I guess because her immune system is  so compromised during that period. Now it has me wondering as she is spot free, I guess it is OK. Her pediatrician seems to think it is, but of course he had never even heard of pleva until my daughter.