Author Topic: Pityriasis Lichenoides Chronica  (Read 576859 times)

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Offline Angela7

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Re: Pityriasis Lichenoides Chronica
« Reply #160 on: Wednesday March 08, 2006, 03:07:42 AM »
Hi Jahan - my son (now 6 1/2) did 2 rounds of Erythro a few years back, the first one when he had his worst winter and was totally covered.  The first time we tried it it worked amazingly well.  The second time, a number of months later did nothing for him and I have not tried it since.  We are now on year 4 with Pleva and are having our best winter yet.  He has had very few spots and I have no idea why or how come.  Perhaps it is starting to burn itself out as they say . . . oh how nice that would be.  The only difference I do know about is that he got the most sun he ever had in his life last summer and was very tan to start the fall and winter.  He does get the occasional spot on his face and they tend to be bad ones (the deep kind that take a long tim eto heal) - he has a scar under one eyebrow from one a few years ago.  I send you my best and Hang in there!!       

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #161 on: Wednesday March 15, 2006, 11:55:39 PM »
Does anyone with the chronic PLC version ever get lesions on their face?  I know the PLEVA version occassionally presents on the face, but I was wondering about the chronic version.

J

Offline elseaeff

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Re: Pityriasis Lichenoides Chronica
« Reply #162 on: Thursday March 16, 2006, 12:51:59 AM »
After more than six months of nearly-free PLC, it has begun its ritual again. From what I've experienced so far, I've just got to live through the cycle and I'll be right as rain again! I don't dare increase my tanning time, I don't want to burn when the pustules on my legs are so prolific and my skin is getting thin and paper-like again. I had to take another round of Zithromax for the staff infection and keep using the ointment version on all of my open sores.

I'm nearly 50, my knees have been destroyed by the IV-infused steroid treatments I get for Multiple Sclerosis, I've torn the lateral meniscus in my right knee and I now flow through the PLC when it feel like making my life miserable.

But, what can you do but keep fighting it all?

Elseaeff

Offline EX-itchell

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Re: Pityriasis Lichenoides Chronica
« Reply #163 on: Thursday March 16, 2006, 11:39:33 AM »
Hi Elseaff,

I'm so sorry to hear you're re-cycling the plc.  Is there any reason you know it has started up?

I'm still free of it - or just with nearly faded spots anyway.  Try to be really careful what you eat.  I'm sure that helped me.  And wear pure cotton so it doesn't hurt so much.

I still look in here most days, so I'm happy to buddy you thru it.

 :hugs:
Itchell
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Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #164 on: Thursday March 16, 2006, 07:55:00 PM »
Hey Elseaeff,

I'm sorry to hear that your PLC has started again. I thought mine would start again, but it's just a few spots coming and going. I tried tetracycline and I think that helped. When your taking it you can't go in the sun or anything or get too much sun exposure, because I think it's a pigment that restores natural skins cells.. Not really sure though, you should ask your doctor about it.

Thanks,
PLC4ME

Offline elseaeff

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Re: Pityriasis Lichenoides Chronica
« Reply #165 on: Thursday March 16, 2006, 08:06:06 PM »
Dear PLC4ME:

You're right about the sensitivity to sun, which makes for quite a catch-22. The sunlight actually helps the PLC but sunlight will cause other problems with tetracycline. Unfortunately, I am allergic to tetracycline and it's various forms.

I've just got to keep on keeping on!

Thanks!
elseaeff :dance:

Offline anne777

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Re: Pityriasis Lichenoides Chronica
« Reply #166 on: Monday March 20, 2006, 03:23:21 PM »
My daughter 15 was diagnosed with PLEVA..confirmed with biopsy. she is on 1000 mg of eurythromiocin sp? for 4 weeks and it has done wonders already..we are in our 3rd week.

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #167 on: Wednesday March 29, 2006, 12:54:58 AM »
Hi everyone,

I am so discouraged with my daughter's PLC.  Even though we live in sunny Florida now, it still flares up alot in the winter...UV index is lower you know.  And because it is warmer here than where we were up north, she is wearing more summery clothes all winter, and it is therefore alot more noticeable.  I just feel discouraged about it.  It is not too that bad on her torso.  Mainly on upper arms (adjacent to arm pits, and on shoulders).  It is also very extensive on her upper legs and trunk.  Not that extensive on belly.  It is so spotty and red.  I am really fed up, and just thinking that it will never end.  I know they told me that it will probably burn out around puberty, but that is so far away...and I worry that they will be wrong.  And I worry about it turning into something dreaded...

She is going to be 8 this summer, and we just had our "6th year anniversary" for this PLC stuff.  My husband is more optimistic.  He says..."is it any worse than last year?  The answer is "no", so I should be encouraged.  It is hard for me to tell though if it is much better.  I don't think so.  Perhaps it is better on her arms, but certainly not on her legs. 

Where is everyone else's distribution for PLC?   Does anyone notice that if they get a bit of sun that the PLC looks redder and "angrier" after for a day or so?  How many spots do you PLC people have on your legs?  My daughter does have them on her lower legs, but it is not as noticeable as her knees and up above.  There are so many spots to count on her upper legs, it is pretty much all over. 

How are the PLEVA people all doing?  It seems to me that the PLEVA group gets less spots, but that they are angrier/necrotic.  And then, the PLC groups get a ton more spots that are not as angry/pussy/necrotic.

Any feedback from anyone is appreciated! 


Offline Angela7

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Re: Pityriasis Lichenoides Chronica
« Reply #168 on: Wednesday March 29, 2006, 06:50:55 PM »
Hi Jahan - I am sorry to hear you feeling so discouraged - believe me I can relate - our 5 year battle with our almost 7 year old son has often left me very down in the dumps and I usually found this time of year the hardest -like you said lower UV index where you are - long winter ending up here.  I just know from my experience that the less I obsess about it the better it is for me and my son (and the rest of the family).  I also have realized over time that it is all that he knows, he has no memory of skin without spots and even asked me once, in a very concerned voice, where are my little brother's spots (like there was something wrong with his brother).  That was a real wake-up call to me that I will try to shield him from thinking that there is anything wrong with him or that I should make him feel bad unknowingly - but easier said than done sometimes when they are covered.  Plus, I can imagine that an 8 year old girl is much more concerned about her appearance than a 7 year old boy, making it harder still.     

As I told you, for reasons unknown to me this has been our best winter yet with very few spots.  This is after years where he was literally covered with hundreds of spots. His spots tend to concentrate themselves to his trunk area, underwear region, inside elbows, backs of hands and the occasional one under an eyebrow or on his jawline - the face spots always being the deepest and worst.  His spots definately get redder and worse after they are first exposed to sun and he suffers from that hypo (hyper?  I always get them confused) pigmentation all over his chest and back, although the tan eventually fills in after a lot of sun.  He just got over a stomach virus and that usually would have led to tons of spots and this time only a handful.   

I remain confused about the Pleva/PLC distinction probably because my doctor claims that there is really no distinction once it returns more than once.  All I know is that he was originally diagnosed as having Pleva 5 years ago but he has had about 20 different outbreaks over the years so clearly he has the chronic form.  His spots tend to be smallish, red and can get the scab or crust at its center.  He occasionally gets very large and deep ones that require ointment to heal.

I can tell you that I never saw any signs of it burning out slowly over time until this past winter - he was covered only a year ago - so perhaps your year is fast approaching.  They say, slow improvemenbt over time is usually the path that the burn out takes so hopefully that will soon be the case.  I guess all we can do is help them deal with the realities of having it and enjoy when it slows or improves.  And vent to each other - that small group of us Pleva/PLC moms!!!  Summer is coming so hang in there and know that there are many people out there sending you their best and hoping that it gets easier in the future.  Take care, Anglea

Offline EX-itchell

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Re: Pityriasis Lichenoides Chronica
« Reply #169 on: Thursday March 30, 2006, 09:25:28 AM »
Hi plc fellow sufferers,

I just want to tell you it is possible to have no spots.  I have been really nervous about going live in case I jinxed things but I have had no new spots for two months now.  My scars are fading, and I don't itch at all. 

At its worst in the last quarter of last year I had hundreds of spots - maybe thousands I certainly couldn't have counted them all - mainly on my trunk: under breasts, armpits, belly and small of back, and between my legs.  I had a few on my wrists which I think was because I am on a computer all day and they get hot on a gel wrist pad.  I had virtually no spots elsewhere on my legs, arms or face.  Nighttime was agony, and I slept with a frozen gel pack to keep me cool and stop me itching.  I wore - and still mainly wear - 100% cotton which I find I can sweat through.  I used organic sesame oil which I rubbed all over my body every evening, and mornings too when needed.  I washed as little as I could by a quick shower using pure glycerine as soap.

I didn't use steroids other than minutely, and when they didn't work, I stopped.  I took the view that it was related to my insides and spent several months off red meat and stimulants, and less time off wheat too.  I juiced vegetables and ate sprouting beans.  I did no excercise as getting hot meant getting more spots.

I used ayurvedic medicine which mainly entailed what to eat and not to eat, and had regular invigorating massages to help the disease pass through and out of me.

I went for a holiday over Christmas, purposefully to the sun, and tried lying in it for a few minutes at a time.  I know it is said that sun is helpful, but my concern that even if I got rid of the spots temporarily through sun, they would come back once in the UK, stopped me being commited to this course of action, and as it felt as if the sun was burning me - even with suncream on, I stopped trying that.

I still don't understand what caused the plc - maybe a combination of stress and a history of small allergies - but I am still unable to eat red meat in the evening.  I have discussed this with my GP and am having further blood tests and an ultrasound to check gall bladder in the next few weeks.  I will post any answers in case they are of help.

I would just urge sufferers to try a detox diet for at least two months.  The first sign you are getting anywhere is getting no new spots, but you then have to persist for some months in my view before you can hope to be clear.  I obviously can't say that I won't get it again.  I just pray I wont!!

Good luck to you all, and :cf:

Itchell
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Offline meredithj88

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Re: Pityriasis Lichenoides Chronica
« Reply #170 on: Monday April 03, 2006, 03:10:58 AM »
Hi I'm new here, and I can't even say how happy I was to find this site and this specific topic. I'm 17, and I've been suffering from PLC since I was 4 or 5 years old. I've never met anyone with the same problem, and I've always felt really out of place with it, so I'm glad I can finally find out what causes my "skin problem". I've recently read so much about what causes it, but I want to know how people get over the psychological aspect of it? I've never known what it was like to have normal skin, and no treatments have worked for me so far. It's caused me a lot of insecurities, as I can't count the times people have shouted out of no where, "do you have chicken pox!?!?" or something else mortifying like, "whats wrong with your skin?!?!", and only because they could see the spots on my arms.  One time when I was seven, I was pulled out of swimming class and had to get a doctors note saying my skin condition wasn't contagious, because one of the other children's mother demanded to know what was wrong with me and my skin. I'd love to talk to anyone with the same problem I have, because I've never been able to relate to anyone like this before. I'd love to hear from the people who have suffered from this problem and have overcome it, and how their lifestyles work for them, because I'm lost, and very sick of PLC.

Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #171 on: Monday April 03, 2006, 05:19:54 AM »
Hey meredith, I am also 17. I had PLC last year for almost a whole year. And I still have some spots that now are dark. When I first got it, it was like a month before we had to go back to school. And I thought it would pass. But the doctor said it would take a long time for it to pass.

 I didn't want to go to school but my mum made me. So I went, with like a jumper and long pants in the middle of summer .. But people still saw my hands, and it looked like I had chicken pox. And people thought it was contagious. But most people didn't even know I had it, because I always put the sleves of my jumper over my hands. It's quite embarrasing at first, but I eventually got over it. And I'm glad I did get it, as I learnt not to care what other people think about me or not get embarrased so easily. I sorta figured out the whole concept of embarrasment. You put yourself in the other persons shoes and think "What would I think if I were them". Then you see that most people judge before they know. Yeh sure they are prolly saying stuff behind our backs like, have you seen Bobs arms? He's got some disease. Well we all face something in our lives sooner or later, ours have just come now. They might get something even worse when their older. I know it's not good to think this way, but usually there is someone who has something just as bad or even worse than you've got. It might not be visable.

 But anywayz PLC as I've read usually only lasts in a particular stage of life. And you and I are going into adult hood and before you know it you will have clear skin. Also you should ask your doctor about tetracycline. It helped me. If you are taking it you have to get less and less sun. Also the cause of PLC is not yet identified. Some say it could be a microorganism. Some say it's genetic. I believe it is both. Some sort of molecule or substance or microorganism influences the gene and PLC is formed. Another thing you could try is going on a different range of diets. I read earlier in this thread that it had worked for someone. For example, try eating less sugar or less milk. Try changing your lifestyle for a few months and see how it goes. Instead of sugar eat honey. Go to the beach often, if you spend a day in the sun, it helps tan your skin and the spots fade. Also are you currently using any medication?

Sincerely,
PLC4ME

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #172 on: Monday April 03, 2006, 06:06:32 PM »
Hi Meredith,

I am sorry to hear about your PLC.  My daughter has had it since she was 2 and she is now going to be 8 this summer.  How extensive was your rash in the beginning?  How extensive is it now?  Have you noticed that it got better post puberty?  What about prepuberty compared to now?  I can relate to the swim lesson thing.  Something similar happened to my daughter when she was about 6.  Where is the distribution?  Arms, legs, face?  Worse on upper arms and legs?  All relatively flattish, or are some pussy/necrotic?  My daughter's luckily do not get pussy, etc..., since she has the chronic version (PLC). 

Sincerely,

J

Offline elseaeff

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Re: Pityriasis Lichenoides Chronica
« Reply #173 on: Monday April 03, 2006, 09:26:46 PM »
When my son was 5, he was diagnosed with severe ADHD and I was told he would grow out of it when he reached puberty. He is now a 25 year old -- still with severe ADHD. There are many of us who post to this topic who are WAY past childhood and puberty and we suffer from PLC. I wouldn't put too much faith in the age-waiting game.

Whatever causes PLC to activate is still unknown.  It's like the Multiple Sclerosis theory that you contracted a virus at one time in your life and later, contract another type of virus that 'turns' the MS factor on. There are so many viruses that remain active in your system that are impossible to isolate.

My heart goes out to the children who have PLC but even more to the adults who suffer from it, never having lived through the stigma of 'wearing the pustules' in public before. PLC4Me and Meredith, Itchell and others can relate to the shunning we receive from those who don't understand that PLC is not contagious or contracted by something we 'did' or 'took.'

My PLC erupted for the first time last year, at age 49. There is no outgrowing it, you must adjust to the factors that bring on the mess and try to eliminate them from your life. Because of the MS, I am susceptible to chronic fatigue, stress and intolerance for heat. If I ignore these things, I can be assured the PLC will attack me with a vengenance.

I have the chronic version and get both types of break-out at the same time -- pustules and tiny pin-prick type rashes. The skin dries and tears, the pustules weep. From what I've researched and read, the effect on everyone is different. Beside the common health-stress with which everyone must deal, there is the matter of what you eat and drink and the effect of toxins in your environment (pollution, insecticides, metals, etc.).

There doesn't seem to be any commonality between those of us who suffer from this 'disorder.' What works for me doesn't work for Itchell, and she finds that he control using suppliments and food works best for her, oithers rely on Tetracycaline which is a poison to my body.

My intention today is not to insult anyone, I'm only pointing out that as much as we'd like a page from a book to tell us what will positively work to cure or control the PLC, or knowing exactly what the future prognosis will bring isn't going to happen for a long time.

I think I"m just having a bad PLC day...

Thanks!
elseaeff



Offline littlephe

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Re: Pityriasis Lichenoides Chronica
« Reply #174 on: Tuesday April 04, 2006, 10:52:55 PM »
I have a question about PLEVA.

I've had this breakout since Feb 14th. I have had two different biopsy's from two different dr.s. One says possibly PLEVA or drug reaction and the other one says Pityriasis rosea. I just don't know what to think. What are the PLEVA symptoms you guys are having. I'm 34 yr old female and I am 7 wks pregnant too.

Mine started out with a little bit of a break out under my breast, then it gradually spread throughout my trunk area and around 2 weeks later it exploded down my arms on the insides, groin area (the folds) and the back of my knees. It was red and splotchy. When you look at pics on the internet it looks like rosea and PLEVA. Very weird.


Offline jen1

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Re: Pityriasis Lichenoides Chronica
« Reply #175 on: Sunday June 25, 2006, 07:24:36 PM »
Hi, Im new here. I live in the UK and I also have found out that ive got PLC  . It started November last year when I was 12 weeks pregnant, starting on the trunk and chest and spread all over apart from my face (phew!) My baby is 6 wks old and Ive still got it (i was hoping it would go!). Around or after the time the spots appeared I was ill from November all through winter with one virus after another, I seemed to get everything...Im not too bad now though! Im going to try out the light therapy soon, so fingers crossed eh! The Derm said its just something you get..no reason..we are not born with everything, things can just appear later in life! Reading this thread has made me feel better knowing that there are others going through the same experience and im so glad that some peoples skin has cleared!  :)
« Last Edit: Sunday June 25, 2006, 07:27:48 PM by jen1 »

Offline elseaeff

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Re: Pityriasis Lichenoides Chronica
« Reply #176 on: Monday June 26, 2006, 03:33:40 AM »
Greetings All!
   It's been awhile, I've had surgery on both of my knees -- a result of an overdose of an IV-infused steroid used to control multiple sclerosis exascerbations. It's amazing how doctors who have dozens of years of schooling can cause something like this to happen to a person. The surgery consisted of drilling into the core of my knees and inserting cadaver cartalege into the holes in the hope to grow new. After being off of my feet for more than eight weeks, I pray it works!
   What it all of this leads to is that I've not been able to get light treatments and I am now covered, once again in PLC. My husband put a small swimming pool in the back yard so I can exercise my knees (it's 8 ft. x 3 ft.) but it also allows me to get the needed sunlight for my skin. The doctor only just took my braces of my legs on Friday so I've just begun to use the pool. I'm very miserable, broken out with PLC and itching from head to toe - again with the exception of my face. This weekend is the first to spend in the sun, but very short times to avoid sunburn which would make me even more miserable than I've been.
   And I thought I was through with PLC! See what you get for thinking! :-[
May all have a blessed day and the best of luck with their fight with the wicked PLC!

Regards,
elseaeff

Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #177 on: Monday June 26, 2006, 06:56:44 AM »
My skin is almost clear. Still a few dark spots which wont go away. I think they will be there forever now.

Anyway, I wish the best of luck to people who have this condition. I know how embarrasing and frustrating it can be at times. I pray doctors will find the cause and be able to cure it.

Cheers,
PLC4ME

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #178 on: Monday June 26, 2006, 11:27:23 AM »
Hi All!

Just checking in.  I saw the new post from Jen1.  Sorry about your diagnosis.  It is going to take a few years most likely.  Have they given you any information?  My daughter will be 8 this coming month and has had it since she was nearly 2.  Summers are good.  Of course, she is never PLC free, but even just regular sun exposure (you know how kids are, always wanting to play outside in the am) helps.  She doesn't sit there purposely tanning. 

PLC4me, glad to hear you are improving.  Have you been getting alot or a little sun, or do you think the improvement is the natural course?  Where are your PLC spots distributed mainly?

Elseaff, good luck with the knees.  I hope the PLC improves once you get out in the sun.

Where are you living?  (I know Jen mentioned UK).  We are in sunny Florida, and came from colder New England.  Tropical sun does improve alot more than northern sun; however, I am always leary of my daughter getting a major tan because of the whole skin cancer thing.

Take care,

Jahanara

Offline Mary1966

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Re: Pityriasis Lichenoides Chronica
« Reply #179 on: Monday June 26, 2006, 05:05:33 PM »
I was diagnosed with PLC over two years ago. I was 38 years old at the time. All the dermatologist could do for me was to offer Adoxa, which is an antibiotic. It seemed to help, however, it is sensitive to the sun light. I was watching my daughter play soccer and did not realize how senstive Adoxa was until I was suffering from severe sun burn. After doing some research, I learned that the natural sun and tanning does help to dry up the spots. I have to say, I am pretty much sick of tanning for two years.