Author Topic: Pityriasis Lichenoides Chronica  (Read 580518 times)

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Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #280 on: Friday September 21, 2007, 01:39:10 AM »
Hello, I've had Pleva for over a month now.  I need to know if anyone has been on a cruise.  My dots started one day after returning from a cruise to alaska over the summer.  Also, a few months back I had the most painful bite of my life (guessing a spider) that left a huge scar.  Has anyone else had a simliar experience?

I'm 20 years old, this is not the best time to be covered in painful red bumps and scabs.  They just keep spreading....from my eyelids down to my toes.  Will they ever stop???  Is anyone else on the verge of a mental breakdown?  And does anyone else feel pain accompanied by the itching?  I get a feeling of waves of pins and needles sweep across my neck and back.  How do you guys deal with this pain?

I didn't get an pain when I had PLC. I don't think that bite would have had anything to do with it. You should get a biopsy done though.

Regards,
PLC4ME

Offline Nichole

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Re: Pityriasis Lichenoides Chronica
« Reply #281 on: Friday September 21, 2007, 04:37:00 AM »
I had a biopsy done last month...it came up as PLEVA  :-[

Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #282 on: Friday September 21, 2007, 04:45:52 AM »
I had a biopsy done last month...it came up as PLEVA  :-[

All you can do now is really just wait it out. Get lots of sun, unless your on antibiotics. Try light therapy, it may help to clear up some spots. If you saw a derm he should have perscribed you some creames. They also help , just make sure your clean when you apply them. And have cold showers, if you have hot showers it will flare up the spots. I felt like I was going to have a mental breakdown, worried about what everyone would think etc. But I just went on with life and it ended up clearing up. I've told a few other people who have had PLC or PLEVA to try tetracycline, it's an antibiotic which I believe had an influence on the clearing up of my skin. You should ask your derm about it. GOodluck with it all, take care.

Regards,
Josh

Offline Nichole

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Re: Pityriasis Lichenoides Chronica
« Reply #283 on: Thursday September 27, 2007, 07:30:39 PM »
So did yours clear up completely or what?  Was it pleva or plc?

Offline stillitchy

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Re: Pityriasis Lichenoides Chronica
« Reply #284 on: Tuesday November 20, 2007, 03:02:37 PM »
Hi, I am a new member to this wonderful site. It is comforting to know that I am not the only one with this strange and annoying disease.

What follows is a recent letter to my GP, getting him up to speed concerning my condition.

--------------------
Dear Doctor B,

I wanted to float a theory by you concerning the recent blood work results that you had contacted me about, as well as finally address a condition that I was hoping would just go away.

Early in the year 2000 I suffered for months with a strange malady that was finally diagnosed after three biopsies and a dozen dermatologist’s visits as being consistent with Pityriasis lichenoides et varioliformis acuta (PLEVA) or Mucha-Habermann disease. It began innocently enough with a single itchy sore on my wrist, but before it was through, most of my skin was covered, save for my face, palms, bottom of feet and privates, with itchy, red, leaking blisters and sores. Doctor K and the dermatologists tried oral prednisone, oral anti-fungals and oral ant-biotics, as well as topical anti-fungals, topical anti-biotics and topical steroids before it finally began to clear. Some of the open sores got quite infected and my limbs began to swell and retain fluid. I looked like a leper version of Popeye. I was also running a fever for much of the time. I was told that I was a day or two before getting admitted to the hospital and I actually wrote my will before things began to turn for the better. I have included photos that you may add to my medical record, and have other ones to show if you decide that I should come in for a consultation concerning this issue.

Just before the attack on my skin started, I had two very bad colds in a row – I do not usually get many colds, never mind two in the same month – and was also scratched *very* deeply on the back of the hand by a cat who was, shall I say, not the cleanest animal that I have every encountered. I was also under extreme stress at the time. So I feel that a combination of the stress and colds may have triggered the attack on my skin. I was tested for allergies, had none, and was tested at the request of my dermatologist for HIV and hepatitis, both negative. I think he was just shocked to see my skin. Afterwards he told me that ‘it was the worst that he had ever seen’.

I now have what I believe to be pityriasis licehnoides chronica (PLC). The acute version went away for good (I hope), but the mild version has waxed and waned constantly since 2000. It goes away for the summer months, but starts up again each and every November, and worsens as the dreary New England weather does. By March I am usually rubbing skin lotion and steroid cream over my arms, legs, back of hands, top of feet, dorsal trunk, etc. Many of the pustules or papules (whatever they are) appear on or around where the biopsy was. As well as in the areas that were affected the most. This year my blood work was a month or so later than last year, that is while my skin just started acting up. Could this explain the 1% differential difference that you mentioned to me on the phone concerning my lab results?

Lastly, I was wondering if there were tests and steps that we could take to rule out Lymphomatoid Papulosis, since it appears to be related to PLEVA, and more easily transforms into Lymphoma, and perhaps also somehow confirm that what I am describing is in fact PLC. I have never seen a pathologist or hematologist for this issue. 

I see this as both an opportunity to get the blood snapshot issue resolved in my mind and to give me some peace concerning my ongoing skin condition. Thanks for you time.

-----------
I recently had some blood work done and my GP called to tell me that my Lymphocytes differential was 1% higher than last year. He was not overly concerned, stating that a hematologist would not even perform tests, on bone marrow, for example, as a result of the differential results, but wants me to follow-up with more blood work in a couple of months. Could PLC possibly account for the slightly elevated T cell count?

One other question, has anyone had luck with probiotics in keeping PLC at bay?

Thanks in advance



Offline stillitchy

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Re: Pityriasis Lichenoides Chronica
« Reply #285 on: Tuesday November 20, 2007, 03:29:27 PM »
I am a 44 year old male.

bunnie

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Re: Pityriasis Lichenoides Chronica
« Reply #286 on: Tuesday November 20, 2007, 07:54:51 PM »
Hi everyone I am leaving this link here because it is all related. Please note in bold.
http://www.skincell.org/community/index.php/topic,23062.msg285624.html#msg285624
Please read about autoimmunity, (an abnormal immune response to self. *auto*= Greek for self) because this is the cause of the resulting manifestation in your skin known as PLC.

You are genetically predisposed to autoimmunity, and the manifestations of this abnormal immune response, (autoimmune response) wax and wane in severity throughout the period of manifestation. Remission can occur in some cases depending on the condition itself, but usually only before the age 45.There are always exceptions to the rule of course. Everything on this thread , age of onset, waxing and waning, treatment offerred, all relate to autoimmunity.

Food and diet will not rid you of this condition nor relieve it. Stress exascerbates any skin condition , it is not the cause of them. There is no cure for autoimmunity, you are born genetically predisposed to it, and these conditions only occur in people who have this genetic predisposition. An autoimmune condition is the pathogenic result of an abnormal immune response (autoimmune response) to normal self proteins. Auto=Greek for *self*Normal chemical signalling processes, which occur naturally between different functioning cells of the immune system, malfunction, (this can happen at any time of life in a predisposed person) and the abnormal immune response (autoimmune response) is stimulated.
It is still in research, but as a result of a faulty gene or genes, in combination with exogenous or endogenous factors (or both)these immune cells malfunction,  presenting an antigen the same as a protein of self, and consequently, within the abnormal immune response, abnormal antibodies (autoantibodies )are produced to "fight and destroy" this normal protein, now presented because of the antigen, as a threat.
Unlike normal antibodies produced within a normal immune response, these autoantibodies do not receive a "signal" to "switch off", because the regulatory Tcells are also malfunctioning, so they remain out reaking havoc! It depends on the information transcribed from the faulty gene where, and which protein is involved, and which antibody class is produced, which determines which autoimmune condition you have. (You can have more than one).
Most first appear around the age of 60, but in some conditions which I think PLC is one, the condition rarely develops after middle age. In children, most revert back to normal before puberty.
 
All that can be done is to suppress the production of the autoantibody in question , by using immunomodulating drugs. Unfortunately this does not target just the autoantibody in question, but the whole of the immune system, hence the reason to have blood checked frequently.Sometimes the condition manifested, does not require Immunosuppressants but a steroid, which is an antinflammatory, or antibiotics or which also contain a good anti-inflammatory agent.Inflammation is the body's first line of defence within an immune response, reduce the inflammation, and the symptoms subside.

Lymphomatoid Papulosis is cutaneous lymphoma. Lymphoma is cancer of the white blood cells.
PLC is thought to be a Lymphoproliferative disorder.
Quote
Lymphoproliferative: Referring to the proliferation of the bone marrow cells that give rise to lymphoid cells (such as lymphocytes and plasma cells) and reticuloendothelial cells (such as macrophages,  which engulf foreign particles).
(As I explained above, these are antigen-presenting cells, called Dendritic cells)
The term lymphoproliferative is in contrast to myeloproliferative which refers to proliferation of bone marrow elements from which come red cells, granulocytes, and platelets.
Both terms -- lymphoproliferative and myeloproliferative -- can apply to conditions that are entirely benign, premalignant, or frankly malignant
I understand that plc and pleva very rarely result in cutaneous lymphoma or Lymphomatoid Papulosis.

Quote
Lymphoproliferative disorders are conditions in which there excessive numbers of lymphocytes (T- and B-cells), including lymphoma (a malignant growth of lymphocytes). The idea that pityriasis lichenoides may be a lymphoproliferative disorder arises because lesions of patients with pityriasis lichenoides showed the presence of immune T-cells with specific CD30+ markers or antigens in PLEVA,and loss of CD7 antigens on T-cells in PLC.
These characteristics of T cells are indicators of lymphoproliferative disorders. The third theory behind the cause of pityriasis lichenoides is the detection of circulating immune complexes, aggregations ( A massing together or clustering of independent but similar units ) of antigens and antibodies deposited in the skin in some patients with the condition(As occurs with my own condition.)
The above quote, taken from this link below, proves most of my explanation and why you had an increase of T-cell count stillitchy, but maybe your doc was not anxious because the count was within the guide lines of this condition?
http://dermnetnz.org/scaly/pityriasis-lichenoides.html
I hope this helps with the understanding of these conditions.
Bunnie


« Last Edit: Thursday February 28, 2008, 07:24:11 AM by bunnie »

Offline stillitchy

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Re: Pityriasis Lichenoides Chronica
« Reply #287 on: Tuesday November 20, 2007, 08:55:31 PM »
Thank you for your quick response and all of the generous info, bunnie!

Mike

Offline galpal

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Re: Pityriasis Lichenoides Chronica
« Reply #288 on: Tuesday December 04, 2007, 11:40:56 AM »
Still Itchy,

RE:  Probiotics and everything else-do anything to boost your immune system but...

We tried them but it did not change my daughter's skin condition.  Only sun helped and spot treatment with Fucidin the minute they appear.  Seems to keep them from getting huge but doesn't stop them.

Her second outbreak (now) is nothing like the first one last winter.  10 spots vs. 300.

Hope you feel better.
Chris

bunnie

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Re: Pityriasis Lichenoides Chronica
« Reply #289 on: Tuesday December 04, 2007, 12:10:20 PM »
Quote
RE:  Probiotics and everything else-do anything to boost your immune system but...
This bears no relation whatsoever to PLC. Plc is as I described above, nothing whatsoever to do with diet. Far from "boosting" the immune system, this is the last thing that should be attempted as within this abnormal response, there is an over production of the autoantibody, that is why immunosuppressants are prescribed for these auitoimmune diseases, to suppress the immune system. Please note the word "excessive" in the quote in my previous post, "Lymphoprolific disorders".
Unfortunately there are no drugs yet available that can pin-point and suppress just the autoantibody in question, and therefore ALL of the immune system is suppressed. That is why, people on these immunomodulating drugs must have their blood checked regulary.Some autoimmune conditions do not require immunosuppressants,usually though a broad spec antibiotic is prescribed in PLC, such as Erythromycin or Tetracycline, not just as an antibiotic, but because they contain a very good anti-inflammatory agent. Inflammation is the body's first line of defence, stimulated within any immune response, whether abnormal or normal.  Reduce the inflammation, and the symptoms of plc subside.Quote below from this link
http://www.emedicine.com/DERM/topic334.htm
Quote
Most cases of PLEVA cannot be attributed to any one cause and are idiopathic
Idiopathic cases occur spontaneous and for no known reason. Idiopathic cases occur usually by a malfunction of these immune cells, of and by self alone, and this genetic predisposition to autoimmunity resulting in this malfunction of immune cells, in such "idiopathic" cases, is not stimulated by *outside the body* enviromental factors , but by internal factors of *self*, stimulating this malfunction. See "Understanding Medical Terminology" thread.
Latin                                                              Greek
idiopathia                   = (primary disease) =       idiopatheia,
idio=(one's own)                                     idios = (personal)
                                                +
patheia=(feeling)                                     pathic= (suffering)
Bunnie
« Last Edit: Tuesday December 04, 2007, 07:59:31 PM by bunnie »

Offline godlyrooted

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Re: Pityriasis Lichenoides Chronica
« Reply #290 on: Thursday January 24, 2008, 10:57:12 PM »
hi, everyone. i to have PLC and it really sucks cause i never had no crap this mess up before in my life. i just got it one day out of the blue. but anyways they say there is no cure for it and i did alot of research on this and i found some medicine that they say works in some people, to stop PLC, i using it now i hope it works, ive been using it for about a month now and i notice a big difference already so hopefully it stops it for good. but im writing this so you'll that are suffering with this screwed up desease so u can try it to and maybe it will help u out, god bless u all and keep tha faith. but hes all what i can find on this desease....

Pityriasis lichenoides may not always respond to treatment and relapses often occur when treatment is discontinued. If the rash is not causing symptoms, treatment may not be necessary. Large ulcerations found in febrile ulceronecrotic Muchas-Habermann disease require local wound care.

In cases where treatment is necessary, there are several different therapies available. Current recommended first-line therapies include:

Sun exposure may help to resolve lesions but sunburn should be avoided.
Topical steroids to reduce irritation. In more recent years concerns raised about their side effect profile has led to the increased use of nonsteroidal topical immunomodulators.
Topical immunomodulators such as tacrolimus or pimecrolimus. Tacrolimus ointment applied twice daily has been used successfully to treat patients with PLC.
Oral antibiotics. The most common antibiotics used are erythromycin and tetracycline. These antibiotics have been used to treat both PLC and PLEVA.
Second-line therapies include:

Phototherapy – artificial ultraviolet radiation treatment with UVB or PUVA has been used with varying success both in patients with PLEVA and in those with PLC.

Third-line therapies include:

Systemic steroids
Methotrexate given orally or by IM injection has been used in PLC and PLEVA. It is often used to treat febrile ulceronecrotic Muchas-Habermann disease
Acitretin
Dapsone
Ciclosporin
For more resistant and severe disease a combination of the above may be used
Pityriasis lichenoides may persist for some years but is generally fairly harmless, although there have been rare reports of malignant transformation. Because of this, regular follow-up is recommended

Offline godlyrooted

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Re: Pityriasis Lichenoides Chronica
« Reply #291 on: Thursday January 24, 2008, 11:00:32 PM »
hi, everyone. i to have PLC and it really sucks cause i never had no crap this mess up before in my life. i just got it one day out of the blue. but anyways they say there is no cure for it and i did alot of research on this and i found some medicine that they say works in some people, to stop PLC, i using it now i hope it works, ive been using it for about a month now and i notice a big difference already so hopefully it stops it for good. but im writing this so you'll that are suffering with this screwed up desease so u can try it to and maybe it will help u out, god bless u all and keep tha faith. but hes all what i can find on this desease....

Pityriasis lichenoides may not always respond to treatment and relapses often occur when treatment is discontinued. If the rash is not causing symptoms, treatment may not be necessary. Large ulcerations found in febrile ulceronecrotic Muchas-Habermann disease require local wound care.

In cases where treatment is necessary, there are several different therapies available. Current recommended first-line therapies include:

Sun exposure may help to resolve lesions but sunburn should be avoided.
Topical steroids to reduce irritation. In more recent years concerns raised about their side effect profile has led to the increased use of nonsteroidal topical immunomodulators.
Topical immunomodulators such as tacrolimus or pimecrolimus. Tacrolimus ointment applied twice daily has been used successfully to treat patients with PLC.
Oral antibiotics. The most common antibiotics used are erythromycin and tetracycline. These antibiotics have been used to treat both PLC and PLEVA.
Second-line therapies include:

Phototherapy – artificial ultraviolet radiation treatment with UVB or PUVA has been used with varying success both in patients with PLEVA and in those with PLC.

Third-line therapies include:

Systemic steroids
Methotrexate given orally or by IM injection has been used in PLC and PLEVA. It is often used to treat febrile ulceronecrotic Muchas-Habermann disease
Acitretin
Dapsone
Ciclosporin
For more resistant and severe disease a combination of the above may be used
Pityriasis lichenoides may persist for some years but is generally fairly harmless, although there have been rare reports of malignant transformation. Because of this, regular follow-up is recommended

Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #292 on: Thursday January 24, 2008, 11:42:37 PM »
Hey I'm sorry to hear another person has this dreadful condition. I pray it will clear for you. And I hope this new med will be helpfull.

Regards,
PLC4ME

Offline Doggburner

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Re: Pityriasis Lichenoides Chronica
« Reply #293 on: Monday February 18, 2008, 04:42:19 PM »
I just wanna know, is there someone out there trying to find out a direct cure for PLEVA?

Offline taty

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Re: Pityriasis Lichenoides Chronica
« Reply #294 on: Monday February 25, 2008, 06:32:54 PM »
Janice,

Do some of yours have a fine scale that peels off, and is your skin dry?  What else did they say to help you out?

Jahan

Offline taty

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Re: Pityriasis Lichenoides Chronica
« Reply #295 on: Monday February 25, 2008, 06:46:09 PM »
Hi everyone,
I've had plc for over 20 years now and it seems like It's not getting any better. Anyone ever try Cellcept? My derm at UCLA recommended it but I'm afraid to take anymore meds. I don't mind the red spots, its the white spots after the skin has peeled off that I don't like. I have tan skin and the white spots shows more.

Offline LIGA girl

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Re: Pityriasis Lichenoides Chronica
« Reply #296 on: Monday February 25, 2008, 08:05:04 PM »
Hi Taty

I take Cellcept, I have been taking it for 8 months with no bad effects. You have to have regular blood tests while you are on it which doesnt bother me but does some. I have to take immunesuppressants as my skin condition is life threatening otherwise and I have taken other drugs before it, Cellcept has fewer side effects for me than the others, in fact I dont notice any  from it. Feel free to ask me any questions about it ....

LG

Offline taty

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Re: Pityriasis Lichenoides Chronica
« Reply #297 on: Monday February 25, 2008, 08:13:24 PM »
Thanks for replying back!! What are the side effects? Has it helped with your skin condition? I appreciate you writing to me. I hope get better!

Offline LIGA girl

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Re: Pityriasis Lichenoides Chronica
« Reply #298 on: Monday February 25, 2008, 08:20:39 PM »
Well, like I said I dont really have any, tho I dont drink much now only the odd glass of wine. With the ones I took before Cellcept I had hair loss, on Imuran, I got anemia and jaundice on Dapsone and I had a really bad reaction that nearly killed me on sulfasalazine so Cellcept has been really good for me. All the side effects stop as soon as you stop taking the drug so if you did get a bad effect you can just stop it, in my case they had to find another drug.  I have had good outcomes with my skin from it too, it has worked better than the others. I would give it a try if i were you, but it's very expensive, I get mine funded by the hospital where my doc works tho .... LG

Offline taty

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Re: Pityriasis Lichenoides Chronica
« Reply #299 on: Monday February 25, 2008, 08:48:25 PM »
Sigh...still kinda scared. My doc did mention that I have to take a few blood test while I'm on the meds. I will think about it some more. Thank you soo much for responding. I will definitely consider using it. I don't have anything else to loose.
thanks again!