Author Topic: Pityriasis Lichenoides Chronica  (Read 576847 times)

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Offline LIGA girl

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Re: Pityriasis Lichenoides Chronica
« Reply #300 on: Monday February 25, 2008, 08:53:16 PM »
Best of luck with it Taty, whichever way you go. Sometimes a course on a med like that can put your disease into remission and for that alone it might be worth a try....  LG

Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #301 on: Monday February 25, 2008, 09:10:44 PM »
Hey Taty,

I would be careful taking the Cellcept, just start with a really small dose and see what effects it has.

Here's a helpful link:

http://www.drugs.com/cellcept.html

I wish you all the best and pray you will clear up.

Try not to stress.

bunnie

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Re: Pityriasis Lichenoides Chronica
« Reply #302 on: Monday February 25, 2008, 09:15:16 PM »
Hi Taty, I was on cellcept for a long time too, it is mainly used in kidney transplants, as it is an immunosuppressant. My hair didn't fall out or anything, but it is a notorious drug for damaging the gums, ie gingivitis, so regular dental care is essential. I was ok on it too, and I was on other drugs as well for my skin disease which is a more severe form of liga girl's. Regular blood samples are taken as LG has pointed out, just to make sure your blood levels are stable. The thing is about all these drugs that are immunosuppressants ( and I have had a real cocktail of them over the years) is the damage (if any ) which can occur long after you have finished the treatment. Having said that, those cases are few and far between, from what I understand anyway, and if this drug is going to help you now, then take it. The thing is you see all drugs effect people differently, and of course have different effects on the autoimmune disease in question. The other thing of course, is that some of us do not have a choice, and would try anything for relief or if one's life was in jeopardy because of the disease.
bunnie

Offline LIGA girl

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Re: Pityriasis Lichenoides Chronica
« Reply #303 on: Monday February 25, 2008, 10:04:42 PM »
I would be careful taking the Cellcept, just start with a really small dose and see what effects it has.

Here's a helpful link:

http://www.drugs.com/cellcept.html

Yes, all the drugs used to treat these diseases are immunesuppressants, but as I said I have not had any bad side effects from this one, the thing about side effects is that not everyone has them all. It talks mainly about pregnant women the risk to the fetus is the main problem, the other is the susceptibility to infection. I have had two infections since being on it and antibiotics cleared them up both times. I am careful with being round people who are ill too ....

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #304 on: Wednesday February 27, 2008, 03:30:11 PM »
Dear fellow PLC/PLEVA-ers,

I read an interesting article on the net about PLC being treated with bromelain.  It was an Italian study.  I don't have the link, but you could google it.  Apparently, these people were treated with bromelain (pineapple extract) for three months and had remission.  Sounds too good to be true.  I am sure it was not a "double blind controlled" thing; but still, intriguing.  I read up on bromelain, and it does indeed seem to have alot of effects on immune system/brain, etc...  for this reason though, my husband and I decided to wait on trying bromelain out on my daughter.  She is only 9.  I wouldn't rule it out for when she's older (post puberty ... fingers crossed that this would have burned out anyway).  Let me know if anyone else has heard of it.  It might be worth reading up. 

bunnie

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Re: Pityriasis Lichenoides Chronica
« Reply #305 on: Wednesday February 27, 2008, 06:03:19 PM »
Hi again taty, ciclosporin is normally just offered to patients whose disease is being unresponsive to other treatments usually offerred, such as topical steroids, or taking other immunosuppressants. Topical Tacrolimus ointment has greatly improved PLC in many cases , so I understand, and my derm reckons that tacrolimus is one of the least damaging of the immunosuppressants. (Actually my OPHthalmologist said exactly the same thing just yesterday!) I am using it in an unlicenced way on my tongue. I know a lady on cellcept at this moment in time,  who has a phenotype of PLC, and she has shown a marked improvement since starting it. You say you have had PLC for over 20 years, you will always carry the predisposition to it even if you go into remission, it is a faulty gene and part of your DNA, this with other either self or nonself factors, or both, stimulates this abnormal immune response.
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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.
Please don't be afraid, or do try not to be. :hugs: These blood tests are just taking a blood sample regulary about every 2 or 3 months to check if your blood levels are within the acceptable boundries. Just think it just might do the trick and kick it into complete remission! hopefully for good!
Bunnie

Offline tetrifin5

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Re: Pityriasis Lichenoides Chronica
« Reply #306 on: Saturday March 01, 2008, 08:25:53 PM »
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?
Ok I have not been on in a long time. Thanks to everyone who responded to my posts.
This jumps out at me because as you can see in my post on the same page as this one (in quotes) Mine all started with an awful, painful spider-bite. At least thats what it seemed to be. And the lashing feeling of needle rain sweeping large parts of the body, very much like having "a chill", I know that too. And each momentary "prick" experienced in this "chill" eventually becomes an actual sore.
They some times form in succession, in perfect spirals, usually ascending in "angriness" even, starting with the one in the middle being the worse, and each one spaced perfectly apart spirals out like a some kind of macabre art. Other times they mey seem farther between, in time and area, but later I will notice the scars form perfect lines sometimes crossing, as if some strange, giant grid were laid across my body .(What Im saying is, for example: Say I gett a huge, angry "weeper" on my neck on the left behind my ear. A few days later I got one on my breast, directly below the first...a week goes by and maybe the are waning and, BAM, a less sever one pops up, 13 inches down on my left hip. Perfect line. Then my left knee, my  left foot, THEN THE BACK OF MY left LEG< MY LEFT BUTT< MY BACK UNTIL IT HAS MADE A FULL CIRCLE!) It is a bluprint of torment, a script of MADNESS
Once I had several very,very angry ones form around my outter labia. I have had them in my mouth, eyelids(once on the inside rim), INSIDE my nose,and in my ears.
Has anyone ever gotten social security for this?
Now I go to the tanning bed every week and have been on erythrocin for 7 months. At one time I thought I was getting better but now I am breaking out again in the large, painful, deep, and weeping sores. My body is scar-speckeled. I have no insurance and even when I promise "private pay" cannot get in to see a doctor. The receptioist cups the phone I hear her say "Its that Stephenie girl" and the doctor says "What does she want,Just call it in", hence, with my most rescent attempt I did get my scrip renewed for another year.
I am tired. I am worried about long-term effects of antibiotics as well as tanning. Also I have purchased stri-vectin and hope it might help with the deep scarring, although the cycle continues. But how does it all relate? 3 weeks ago I quit smoking and am using the nicotene patch. It is working well for me...But will it complicate my pleva? Does it effect tanning?
 I am so depressed over this...Or is this happening because I am depressed. Sigh.

 I will follow the advise from here and search for a specialist doctor. I can give them my soul for payment.

Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #307 on: Saturday March 01, 2008, 09:14:00 PM »
Hey tetrifin5 ,

That's so weird how it spirals, when I started getting mine it started on my stomach and spread like all over like butter. Although some parts I didn't get it which you mentioned like the eyelids and inner ears and nose. I was lucky as mine only lasted just under a year or so. From then I think I learnt to live with it and didn't get stressed as much because most people knew I had some sort of condition. Since I Don't scientists have discovered exactly what causes PLC, it could be related to anything, and be caused by anthing including emotions. You should try and map out what you were doing in your life when it started to disappear and what happened when it started to come back? Is this when the depression hit? I think you need to stop worrying so much and just give in, let it run's it's course. Also you should probably use UVB treatment that is more specific for diseases, like the one's at the derm. About 2 or 3 times a week. If that doesn't work I would find a different method . (UVB never really did anything for me).

Anyway I wish you all the best,

Hope your skin clears soon and you can be happy again.

Take care,
PLC4ME

bunnie

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Re: Pityriasis Lichenoides Chronica
« Reply #308 on: Saturday March 01, 2008, 11:22:07 PM »
Hello tetrifin5, If you haven't already, please read my post on here 286. This is what you have tetrifin5, this is what and why this is happening in you, it matters not what you were doing, what you ate or anything, it is just a combination of multigenous factors in you malfunctioning; and you need the help of a really good dermatologist if you have got a bad outbreak at present. I note you don't have insurance? I don't know what you can do in order to get some help? (I live in the UK, and these problems never arise with us, fortunately.) I am concerned for you if it is breaking out again, as bad ,most especially as you have explained that you got it on the membrane inside the eyelids. It can affect the eyes. Your GP needs a wake up call, does he know anything about these diseases? if not you should educate him! I sincerely hope that you are able to get the correct treatment to keep it under control. Please keep us updated on how you get on, and if you manage to get to a derm especially.
Regards Bunnie

Offline tetrifin5

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Re: Pityriasis Lichenoides Chronica
« Reply #309 on: Sunday March 02, 2008, 01:08:01 AM »
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.
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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.

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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



Thank you all. Im not sure what Im going to do yet. Im having a hard time finding any "specialist". I will try and get an appointment with a nother derm, one who doesnt know Im broke, and I will print your post and the linked article so that I dont go in empty handed and get flustered as I tend to. :-\

bunnie

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Re: Pityriasis Lichenoides Chronica
« Reply #310 on: Sunday March 02, 2008, 11:11:04 AM »
Hello Tetrifin, I think that is a good and the best idea, to first go to your GP with as much info on the condition as you can, and inform him too that it can affect the mouth, and eyes in some cases. Maybe then he can help you to see a good derm. Here are some links for you Tetrifin.
http://www.thedoctorsdoctor.com/Diseases/pleva.htm
http://www.emedicine.com/DERM/topic334.htm
regards Bunnie

Happy1

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Re: Pityriasis Lichenoides Chronica
« Reply #311 on: Thursday March 06, 2008, 02:48:53 AM »
PEOPLE WITH PLC, PLS READ THIS. I HOPE ITS HELPFUL


Hi. i'm new here and i'm just responding to the most current post RE: PLC.

i was browsing on the internet last week and found this site. i didnt know there was so many PLC patients. i felt like i was the only one in this world or in california who has this condition.

ive had a skin condition since i was 13. it started off with a rash here and there and whiten skin. as months pass, it got worse or spread. went to the doc and he said i had eczema. he gave me topical creams to apply. the creams didnt work. as years pass, i decided to find my own way to fix myself. i read alot of info online regarding eczema and i realized i dont think i have eczema. as years pass again, i just gave up. i was always covered up and i avoided many things. it put a toll on my self esteem. going through with this in my teen years then in high school and so on was horrible. being a female and not able to wear what i want was a big blow.  i'm 30 now.

ive been misdiagnosed since i was 13.

i had the rash all over my body except my face. its worse on my arms and legs. the discoloration was all over as well but it was more noticable on my knees, and arms. i was always covered up or i wore large shirts to cover my arm up to my forearm. i didnt want people to ask questions or see my skin. i thought it was ugly to look at. it wasnt very attractive.

last year, i decided to see another doc. i was turning 30 so i wanted to do something to make myself feel like great so why not try and get my skin problem fix. the doc saw me and said maybe i have psoriasis. then he took a biopsy. i had to wait another week to find out the results. so i found out i have PLC.  in the past nothing worked cause i was getting treated or treating something that is not what its suppose to be. PLEASE MAKE SURE YOU ARE DIAGNOSED CORRECTLY. REQUEST A BIOPSY IF AVAILABLE.

my doc didnt assign no cream or anything. i did a light treatment, UVB narrowband. i started last year around june. i had to go to the clinic 3x a wk. the power level goes higher as you go. when i first started i was really skeptical. i wasnt positive about this treatment cause nothing else worked in the past. i was itchy for the 1st and a half months of treatment. i had a hard time sleeping at night. some patients didnt have this problem. i saw improvements around the second month cause i went 3x a wk. i started wearing short sleeves or sleeveless. as i was getting better i started going 2x a wk because it was becoming a hassle to go 3x a wk plus things come up. eventually it will reduce to 2x a wk to once a wk to once a month etc etc. right now i should be going 3x a wk but ive been going 2x a wk. please ask your doc about this treatment if its applicable for you and ask questions about it. my main concern of doing this was skin cancer. the exposure to UV and my age. since this is UVB its safer than getting ur light therapy out in the sun. pls ask your doc any questions or concerns.

i call my therapy my tanning session. it really looks like a tanning booth. its a booth u get into naked and theres all these bulbs. the higher joules u go the longer you stay in. they also make u wear tanning goggles to protect ur eyes. my face is usually covered. my body is the only thing exposed.  other patients who ive seen get this treatment are ppl with psoriasis.

this worked for me. i hope it works for you. i finally got a chance to wear my sexy blk dress. this upcoming spring and summer will be my first time to finally wear shorts and even a bathing suit. 

BEST WISHES!!!!!!!!!

Offline Shauna

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Re: Pityriasis Lichenoides Chronica
« Reply #312 on: Thursday March 06, 2008, 09:01:55 PM »
Hi.

My name is Shauna. I have a 3 year old son, Dylan, who has been diagnosed with Mucha Habermann disease. The last time we saw the dermatologist, he said it is looking like he has the chronic version of the disease. As I started researching, I found that is is sometimes called Pityriasis Lichenoides Chronica. The derm never called it that, but I am assuming that is what Dylan has. His lesions started appearing on December 19 2007. I remember because I thought it was chicken pox and took him to the pediatrician a week later. He initially had a few spots on his chest; then, within a week they had spread to his arms, legs, and butt. His spots were never itchy, and the ped had no idea so sent us to a dermatologist. The first one we saw did a biopsy and told me they suspected Langerhan's Cell Histiocytosis or Urticaria Pigmentosa. The biopsy came back negative for those. They told me it was a viral rash that would fade over time. Well, a month went by all the while the spots were increasing. So, we went for a 2nd opinion. That is when we were told he either had Gianotti Crosti or Mucha Habermann. He has now been on eurythimiasin (sp?) for over one month. I hate it. But, the spots are much lighter and seem to be fading. They are leaving a brown mark on his skin though. I am hoping that will fade.

Anyway, I know nothing about what we are dealing with and am hoping some of you can shed some light. I was told it is not an allergic thing. He is not allergic to anything but that his immune system is overreacting. Can this be bad. I mean, is the outlook going to be ok for my little guy?

Thanks,

Shauna

Offline Shauna

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Re: Pityriasis Lichenoides Chronica
« Reply #313 on: Thursday March 06, 2008, 09:16:53 PM »
Hi!  My daughter was diagnosed with PLC (chronic version of PLEVA) five years ago.  They told me that it would take several years to run its course, and typically resolves by 7-10 years old, or perhaps into early puberty. (She is seven).  They said that childhood PLC is a little more predictable than adult PLC, because with adult PLC, it is a little harder to tell when it typically resolves.  Something physically happens with children leading up to puberty that causes them to outgrow these conditions (supposidly). 

I have never talked to anyone with PLC, and would be interested in hearing from anyone who has had any experience with this disorder. 

My daughters rash is mainly on her body, and sometimes it crops up around her mouth area.  Not to conspicuous, but it does sometimes flare up and become more obvious, partcularly if she uses certain fragrance soaps, fragrance creams, etc...her skin is definitely sensitive. 

Hope to hear from someone with PLC experiences!







Jahan


Jahan,

Hi. I have a son who is 3. He was diagnosed with Mucha Habermann last month. From my reading, I am assuming it is also called Pityriasis Lichenoides Chronica.

Since your daughter has had it for several years now, I am interested in learning about your experience with it. I feel right now at the end of my rope with Dylan. I am going crazy doing everything I can to make these bumps go away. I almost feel ashamed for people to see the bumps. They stare and ask questions. I know they are worried it is contagious. But, I hate having to explain to everyone what it is and why he has it. I don't know why. The derm keeps saying it just has to "burn itself out." But, he has no idea how long that could take. He thought it would have been gone by now. It has been going on since December 19th 2007. We moved from Indianpolis to Georgia into a new house. We all got sick with different illnesses, and Dylan then came down with these bumps all over, and they won't go away.

I am hoping to learn as much as I can about this and what to expect. I understand it has something to do with his immune system being out of whack. Isn't there something to fix that or speed it up to get rid of the disease?

Thanks,

Shauna

bunnie

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Re: Pityriasis Lichenoides Chronica
« Reply #314 on: Friday March 07, 2008, 12:49:35 AM »
Hello Shauna, I am so sincerely sorry your little one has this autoimmune disease.
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I am hoping to learn as much as I can about this and what to expect. I understand it has something to do with his immune system being out of whack. Isn't there something to fix that or speed it up to get rid of the disease?
My post above 286, which Tetrifin has highlighted is what your little one has shauna , why he has it and what can be done about it. Mutated genes as yet cannot be repaired, although research is intensely trying to discover a drug, which will alter the function of the cells, - involved in carrying out the orders -from the "transcribed information" of these faulty genes. Because the information in those genes is faulty, as the immune response is mounted, that information taken by the cells is incorrect, and so each cell interacting as they do, in its turn,  is incorrect. Does that make sense?
People naturally want easy answers there simply are none, because you see shauna this is a genetic thing, your baby is predisposed to having an autoimmune disease, because of mutated genes. The doctor is quite right , almost all children with autoimmune skin disease revert back to normal at puberty. Only a small percentage have it ongoing after puberty, which hints at hormones being the instigator in stimulating these faulty genes. As a matter of fact researchers now also believe that hormones really may incite the predisposition that is there (and always will be), but only in a combination of mutated genes, regulating immune cells and hormones or other autoreactive cells of the immune system. Once these genes are stimulated, the "commands" are read, and malfunctioning of all the cells involved in that response naturally occur.
Sometimes these genetic faults can be stimulated by viruses, vaccines of course, drugs, but usually they are idiopathic. That means that they occur of self (idio=self)(pathic=disease) (auto=self), spontaneously and appear without obvious cause. Nothing you have done or what your baby has eaten , nothing at all that is non-self ie; outside of the body,  has caused this in your baby. He is genetically prone to this and it just takes a certain combination, of self factors, (rather like a combination number on a lock) to have set this predisposition off. Otherwise, the offending non-self cause would be detectable, in blood in particular, or biopsy Again the doctor is perfectly correct. All that can be done is to try and control the pathogenic result (which is the PLC) of the abnormal immune response to "self" tissues (autoimmune response)
Control is the goal of treatment for these conditions. That's what it is really, its more of a condition than a disease. It will as is usually the case with children, just burn itself out as he gets older. It could just last a couple of years, but throughout the time that Dylan has it manifesting, it will flare up and abate, so there will be times worse than others.
There are over 80 autoimmune diseases Shauna , but they all stem from the same underlying problem, mutated Genes, which in combination with other factors stimulates an immune response to self. Unfortunately, these conditions are unpredictable, there is no real pattern to them. There is also no cure. Children though usually have the best outcomes, because at puberty they go away and may never return(in fact they very rarely do in child cases) Adults have it for life, although even that can depend on the condition itself, there are exceptions to every rule.
Not the best of news I surely know Shauna, but at least now you know what you are dealing with. Your baby's skin of course will naturally be sensitive because it is already now traumatised by the result of this response, so  try to use everything that is simple, making sure his clothes are cotton, and comfy, without rough seams or collars. His skin will naturally flare and look bad , then look a little better, that is not due to anything else other than the natural waxing and waning of these conditions.
If it was something else, it could be tested, and of course a topical reaction from anything would make the skin very red too, more prominently so, and you could possibly actually see the two things going on in the skin , kind of a double rash if you like. Naturally such reactions make the condition look really bad, because of the condition already manifesting.
I hope this helps your understanding Shauna, it is difficult when you don't understand what the doctor is meaning or "why" he says things which seem innane, especially hard for a mother. If there is anything you can't understand please do not hesitate to ask.
fondly Bunnie

Offline Shauna

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Re: Pityriasis Lichenoides Chronica
« Reply #315 on: Friday March 07, 2008, 01:09:39 AM »
Hello Shauna, I am so sincerely sorry your little one has this autoimmune disease.
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I am hoping to learn as much as I can about this and what to expect. I understand it has something to do with his immune system being out of whack. Isn't there something to fix that or speed it up to get rid of the disease?
My post above 286, which Tetrifin has highlighted is what your little one has shauna , why he has it and what can be done about it. Mutated genes as yet cannot be repaired, although research is intensely trying to discover a drug, which will alter the function of the cells, - involved in carrying out the orders -from the "transcribed information" of these faulty genes. Because the information in those genes is faulty, as the immune response is mounted, that information taken by the cells is incorrect, and so each cell interacting as they do, in its turn,  is incorrect. Does that make sense?
People naturally want easy answers there simply are none, because you see shauna this is a genetic thing, your baby is predisposed to having an autoimmune disease, because of mutated genes. The doctor is quite right , almost all children with autoimmune skin disease revert back to normal at puberty. Only a small percentage have it ongoing after puberty, which hints at hormones being the instigator in stimulating these faulty genes. As a matter of fact researchers now also believe that hormones really may incite the predisposition that is there (and always will be), but only in a combination of mutated genes, regulating immune cells and hormones or other autoreactive cells of the immune system. Once these genes are stimulated, the "commands" are read, and malfunctioning of all the cells involved in that response naturally occur.
Sometimes these genetic faults can be stimulated by viruses, vaccines of course, drugs, but usually they are idiopathic. That means that they occur of self (idio=self)(pathic=disease) (auto=self), spontaneously and appear without obvious cause. Nothing you have done or what your baby has eaten , nothing at all that is non-self ie; outside of the body,  has caused this in your baby. He is genetically prone to this and it just takes a certain combination, of self factors, (rather like a combination number on a lock) to have set this predisposition off. Otherwise, the offending non-self cause would be detectable, in blood in particular, or biopsy Again the doctor is perfectly correct. All that can be done is to try and control the pathogenic result (which is the PLC) of the abnormal immune response to "self" tissues (autoimmune response)
Control is the goal of treatment for these conditions. That's what it is really, its more of a condition than a disease. It will as is usually the case with children, just burn itself out as he gets older. It could just last a couple of years, but throughout the time that Dylan has it manifesting, it will flare up and abate, so there will be times worse than others.
There are over 80 autoimmune diseases Shauna , but they all stem from the same underlying problem, mutated Genes, which in combination with other factors stimulates an immune response to self. Unfortunately, these conditions are unpredictable, there is no real pattern to them. There is also no cure. Children though usually have the best outcomes, because at puberty they go away and may never return(in fact they very rarely do in child cases) Adults have it for life, although even that can depend on the condition itself, there are exceptions to every rule.
Not the best of news I surely know Shauna, but at least now you know what you are dealing with. Your baby's skin of course will naturally be sensitive because it is already now traumatised by the result of this response, so  try to use everything that is simple, making sure his clothes are cotton, and comfy, without rough seams or collars. His skin will naturally flare and look bad , then look a little better, that is not due to anything else other than the natural waxing and waning of these conditions.
If it was something else, it could be tested, and of course a topical reaction from anything would make the skin very red too, more prominently so, and you could possibly actually see the two things going on in the skin , kind of a double rash if you like. Naturally such reactions make the condition look really bad, because of the condition already manifesting.
I hope this helps your understanding Shauna, it is difficult when you don't understand what the doctor is meaning or "why" he says things which seem innane, especially hard for a mother. If there is anything you can't understand please do not hesitate to ask.
fondly Bunnie

Bunnie,

Thank you so much for your in depth response. How do you know all of this? Are you a doctor?

I really do appreciate you taking the time to explain things to me. The dermatologist never went into so much detail about this. He never mentioned anything about autoimmune or the possibility that Dylan could have this thru puberty. I am a bit shocked at that. I mean, I have been praying this would fade for 3 months now only to learn that it could take years. It is difficult to see his skin like this constantly. Summer is coming too. He LOVES to swim. What are people going to think? I feel so bad for him.

As a last resort, I visited an alternative medicine doctor a few days ago with Dylan. He did some simple muscle testing on Dylan and told me that he believed the problem was with Dylan's kidneys; that his kidneys were not able to filter properly resulting in this "rash." He gave me some herbal supplements for him to take that are supposed to boost his immune system and rid the kidneys of toxins. Yes, sounds crazy. I was desperate and hoping I could find something to help the bumps disappear. Should I be leary of giving him supplements?

Thanks again,

Shauna

bunnie

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Re: Pityriasis Lichenoides Chronica
« Reply #316 on: Friday March 07, 2008, 11:02:48 AM »
Oh Shauna Don't please! It's piffle! The little chap has enough to cope with , without that!  I'm not a doctor No, but I have studied the subject in depth, and I have a life threatening autoimmune skin disease,which has never stopped since 1993. My specialists are leaders in research of autoimmune disease in the UK, and apart from my own knowledge I ask them LOADS of questions! It has nothing at all to do with nutrition, and I make no apologies for saying it. That is not to say one must not endeavour to eat well and healthily, your immune system like everywhere else needs good nutrition sleep , rest and exercise. These things take time. I also said that the mean duration in a child is two to three years, however these conditions are quite rare, therefore the time span is unpredictable. I also said that the vast majority will clear entirely before or at puberty, never to rear its ugly head again. It is different for adults, They can have long periods of remission, and short ones too. I went into remission for 18 years!
The very fact that this man has told you that is so wrong! The idiot! I'm spitting blood here! Doesn't he realise a little child is involved, and he is messing with these outdated concepts and attempting to get money from you for the privledge! Far from boosting the immune system, that is the whole problem in the first place, and the very last thing that needs doing! If he knew anything at all about this ,or how the immune system works, he would not have told you that, it is proof he's a quack. I don't know how they dare! The cells which produce an abnormal antibody to self, (an autoantibody) are failing to regulate the production of them, and cannot switch the process off. This is normally carried out by a regulating Tcell.
The cell (a plasma Bcell) which is producing this abnormal antibody, has received a misdirected command, to put it simply, due to a combination of one or two of possibly a viral infection, hormones , autoreactive immune cells and most importantly the genes which are mutated and hold the "wrong" information in the first place. How can a little child have toxic substances in his little body? Babies sometimes have these conditions. Please don't give him any supplements, because you are confusing the situation if you do. I presume blood samples were taken from Dylan at the derm's?
Anything at all amiss, lack of essential nutrients anything at all would show up in that full blood spec. If your son had a gluten (wheat intolerance) that too would be noted, anything at all suspicious.
What treatment if any was offerred by the derm? Sometimes some childhood cases remit on their own without intervention. There is a difference between Pleva and PLC although one is a variant (a phenotype)of the other. Pleva is "acute" which means of short duration, "Chronica" is long duration. Take this to your derm Shauna and ask him if I am right.
Quote
Can this be bad. I mean, is the outlook going to be ok for my little guy?
Of course he is going to be fine, I know that is so hard for you to grasp just yet, but you need to remain calm and assured that it will go in time. There will be times it looks worse than others, then look as if it is disappearing. That is one of the symptoms of autoimmune disease, they wax and wane in severity. I understand that eurythomycin has had good effects on child cases of PLC. It is a broad spec antibiotic with good antinflammatory effects.
I will send you some research reports via PM Shauna. I cannot send a link , because you need registration to access the files, even I cannot access some.
Again please ask if you need to understand anything that I have said.
Kind regards Bunnie
« Last Edit: Friday March 07, 2008, 11:14:49 AM by bunnie »

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #317 on: Friday March 07, 2008, 06:12:14 PM »
Dear Mother with 3 year old.  (Sorry, can't remember the name, but something with "shaun".  My daughter is going to be 10 this summer.  As you know, she was 2 when she was diagnosed.  I am going to be blunt with you, from one mother to another.  When she was first diagnosed, I was extremely upset and wondering "why me?"  (Or, why not me, instead of her!).  Sun helps (he should swim to get UV exposure, but do put sunblock on just like anyone else).  After a bit, I learned to accept it, because I knew that it was going to be years.  Puberty is approaching, and I can only pray for clearing.  Sometimes, weeks go by and I don't give it much thought.  Winter is usually tougher for me, because it gets alot worse.  I moisturize with petroleum jelly, just after showers.  We live in the southeast (Florida) and PLC is so much better with just a little bit of sun.

A word of advice:  Do not let your son knows how much it bothers/worries you.  It will give him more of a complex.  I am very encouraging to my daughter that it is not a big deal, it will clear, etc... (even though inside, sometimes I feel like crying with frustration).  I am especially stressed because she is getting to that "self conscious " age.  I try to look on the bright side.  At least, our kids got it young, and don't/ will not  remember any different, until it clears.  Stay positive.  Again, some days (especially spring/summer/fall) I don't give it much thought.  But other days...We have to accept what we cannot change.  (Sorry for sounding like a cliche).  It will go.  It is just a matter of time.  THe docs I talked to said that they typically see about up to 90% or so of children clear by/at puberty.  Do I worry that my daughter won't clear?  Of course.  But in the mean time, I try to stay positive, if not for my sake, for hers.  Also, do not be afraid about the pool.  It is too complicated to tell people "PLC", so, when she first starts swimming in front of people, if they ask, I just say (and now she says) that it is like an eczema (it is, afterall, similar to a spotty eczema, and most every kid has heard about eczema).  So far, except for the occassional questions by school mates, I have found kids to be pretty accepting.  When your son gets older, you should talk with him about how to respond to people, because it is a natural question.  After a little swimming/sun (with sunblock!) it will improve substantially, you will be surprised.  Of course, it does come back.  You're not alone. 

Take care,


Offline Shauna

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  • Dylan 3 yrs. old
Re: Pityriasis Lichenoides Chronica
« Reply #318 on: Friday March 07, 2008, 08:19:01 PM »
Dear Mother with 3 year old.  (Sorry, can't remember the name, but something with "shaun".  My daughter is going to be 10 this summer.  As you know, she was 2 when she was diagnosed.  I am going to be blunt with you, from one mother to another.  When she was first diagnosed, I was extremely upset and wondering "why me?"  (Or, why not me, instead of her!).  Sun helps (he should swim to get UV exposure, but do put sunblock on just like anyone else).  After a bit, I learned to accept it, because I knew that it was going to be years.  Puberty is approaching, and I can only pray for clearing.  Sometimes, weeks go by and I don't give it much thought.  Winter is usually tougher for me, because it gets alot worse.  I moisturize with petroleum jelly, just after showers.  We live in the southeast (Florida) and PLC is so much better with just a little bit of sun.

A word of advice:  Do not let your son knows how much it bothers/worries you.  It will give him more of a complex.  I am very encouraging to my daughter that it is not a big deal, it will clear, etc... (even though inside, sometimes I feel like crying with frustration).  I am especially stressed because she is getting to that "self conscious " age.  I try to look on the bright side.  At least, our kids got it young, and don't/ will not  remember any different, until it clears.  Stay positive.  Again, some days (especially spring/summer/fall) I don't give it much thought.  But other days...We have to accept what we cannot change.  (Sorry for sounding like a cliche).  It will go.  It is just a matter of time.  THe docs I talked to said that they typically see about up to 90% or so of children clear by/at puberty.  Do I worry that my daughter won't clear?  Of course.  But in the mean time, I try to stay positive, if not for my sake, for hers.  Also, do not be afraid about the pool.  It is too complicated to tell people "PLC", so, when she first starts swimming in front of people, if they ask, I just say (and now she says) that it is like an eczema (it is, afterall, similar to a spotty eczema, and most every kid has heard about eczema).  So far, except for the occassional questions by school mates, I have found kids to be pretty accepting.  When your son gets older, you should talk with him about how to respond to people, because it is a natural question.  After a little swimming/sun (with sunblock!) it will improve substantially, you will be surprised.  Of course, it does come back.  You're not alone. 

Take care,



J

Thanks for responding. I am so sorry to hear that this has been going on with your daughter for so long. I had no idea it could really last that long. Dylan's pediatric derm keeps telling me that it should be gone soon. He said it is very rare when it lasts until puberty and usually clears before that, especially since Dylan is only 3.

I guess I just keep thinking and wondering what could have caused this. My husband and I are originally from Pennsylvania and moved to Cleveland soon after marrying. All of the kids were born there except for our 4th, who was just born in January. We now live in Georgia. We moved here about 5 months ago and immediately started experiencing a lot of sickness. All the kids got croup, strep, the flu, and then my husband had viral meningitis. It was right before he came down with that illness that Dylan started getting these spots. I thought they were chicken pox initially. Now I know differently. Right now I am in the process of having the air quality in the house checked. We moved into an older home and had previously always lived in a new home. We built both of our homes before moving here. We are currently renting and looking to build again. This house has a drive under garage, which lets a lot of air pollution up into the main living area. The landlord also has it sprayed for bugs every 3 months or so. So, there are a lot of pesticides we have been exposed to that we never had before. We never had to spray for bugs in the North. The lawn is also chemically treated. So, I have cut all that out - no more chemicals. I also threw out all my commercial cleaner and have started using natural cleaning products - vinegar, baking soda, washing soda, borax, lemon juice, etc. I also switched to all natural soaps and have started buying organics. Does any of this sound like it would help? Or, has your experience been that it will just be. There is absolutely nothing that can be done?

You mentioned you live in Florida. Do you also use chemical bug treatments?

So far, Dylan is totally fine with his "spots." They don't really bother him, although as they heal, he gets a bit itchy. It is an odd little condition though. He starts out with a little bump or bite looking mark which turns into a scab, fall off and leaves behind a flat widened out mark. Is that similar to your daughter?



Thanks for your insight.

Shauna

bunnie

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Re: Pityriasis Lichenoides Chronica
« Reply #319 on: Friday March 07, 2008, 08:57:30 PM »
Shauna, it won't. When it talks of enviromental factors, it means severe exposure to reactive chemicals, radiation, viruses, etc. none of your other kiddies have come down with anything in connection with those things have they? Or you and your husband for that matter?  Your husband had viral menengitis, did the derm say if it was connected? because if it was that virus would have been in Dylan, not to say of course that it wasn't another viral infection altogether. Do you see what I mean Shauna?
Your derm is right it does normally clear before puberty lasting for about 2-3 years in most cases, but not every case is the same. J has given you good advice, she has experienced it for herself, and I have told you the same. You have done nothing , your home enviroment has done nothing. If it were a viral infection that kicked this off the derm would have told you, especially if it was that or even some type of streptococcus. I have explained it as best I can, like I said there is no simple answer, and I know it is difficult to accept, but as J says, you learn to accept it. here is another link shauna which is saying what J and I have said.
http://www.women-health-guide.com/skin-disorders/pityriasis-lichenoides.htm
regards Bunnie