Author Topic: Pityriasis Lichenoides Chronica  (Read 552584 times)

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bunnie

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Re: Pityriasis Lichenoides Chronica
« Reply #380 on: Wednesday May 07, 2008, 12:26:30 PM »
Hi everyone, If you are interested, (I certainly don't wish to intrude or offer information if it is not welcome) but I think I might be able to explain the following....Although my explanation may not be perfect, (so please don't be too critical) It's complicated, still under research, and I don't think a specialist would have the time to explain it, although there are some who are willing, especially if their patient really wants to understand.
 
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I wonder if this is connected to the burn out at puberty.  Of course, that does not explain the adult Pleva/plc.
First it is essential to understand that not every case remits at puberty, a very small percentage do carry on into adulthood. To understand the function of Tcells scroll down on this link to lymphocytes, and I describe what happens in the Thymus. Basically these lymphocytes, shortly after birth, migrate from the bone marrow to the Thymus, an organ in the top of the chest, where they mature to become T cells. Here they undergo a process of positive and negative selection , whereby they learn to distinguish self from non-self. Those that survive these processes become Tcells.
http://wassail-allthatilove.blogspot.com/
To explain
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I wonder if this is connected to the burn out at puberty
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The thymus gland, is a primary organ of the immune system.  It activates T cells and produces hormones key to the immune system.  At puberty, our immune system is at its zenith, and the thymus gland is at its largest.
It is known at this time to "Involute" , (which means to return to a normal or former condition.) I am not 100% sure, if this is the reason, (maybe 99%!!)  but cells which secrete the human growth hormone (HGH) improve immune activities, for e.g
Manufacture of new antibodies
Increased production of T cells and interleukin-2
Greater proliferation and activity of disease-fighting white blood cells
Greater activity of anticancer natural killer cells
Stimulation of bacteria-fighting macrophages
Increased maturation of neutrophils
Increased production of new red blood cells
This then (in italics) could account for these hormone changes altering the genetic predisposition.
To explain
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Of course, that does not explain the adult Pleva/plc
The majority of autoimmune conditions appear for the first time after the age of 40, with an average age of onset, around 50-60yrs.  Almost immediately after puberty the thymus begins to shrink until it is a shriveled shadow of its former self by age 40.  By age 70, more than 95% of it has turned to fat or fibrous tissue.  The shrinking thymus correlates with a rise in the diseases associated with aging, including cancer, heart disease, Alzheimer’s, autoimmune diseases, and infectious diseases.  There is also a decline in T cells and immune factors, such as interleukin-2.  As such, scientists believe that restoring the thymus gland to function can rejuvenate the immune system. Immunologists have shown that injections of cells that secrete human growth hormone (HGH) could regrow the shriveled thymus gland.

If then at puberty, there is a proliferation of the human growth hormone, and this (having the affects that it does,by improving immune activity, as listed above)  causes, (because of the increase of production of these cells,)  an alteration of the genetic predisposition,  then equally, if, as is known, at around middle age, there is a reduced or almost total depletion of the immune factors in that list above, then that accounts for the majority of autoimmune cases rearing their ugly head at this time of life.
I also found this very interesting , although it is only postulated ....
http://iji.sums.ac.ir/winter2005/letter.pdf
regards Bunnie

« Last Edit: Wednesday May 07, 2008, 12:35:36 PM by bunnie »

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #381 on: Wednesday May 07, 2008, 03:45:26 PM »
Galpal,

You may be interested to know that my daughter has symmetry to her spots as well.  Were you the one in the Boston area who saw Gellis' colleague?  Can't remember.  Does your daughter have chronic PLC or the more acute PLEVA?  Mine has PLC (chronic). 

Sincerely,

J

Offline Needs a Hug

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Re: Pityriasis Lichenoides Chronica
« Reply #382 on: Thursday May 08, 2008, 07:30:38 PM »
Hey guys! Hope you don't mind me joining with a few questions...

So my derm didn't exactly explain the big difference between pleva and PLC but he told me it was 'more than likely' pleva and that I should get over it and it will hopefully never come back. Can someone please explain the difference in diagnosis/prognosis?

Also, I've been reading a lot also saying that it's an autoimmune thingy... is that to say that the medication I was on right before I got it had nothing to do with the spots? My mother believes the medicine caused the pleva as does my boyfriend... and so did I until I read this. Now I'm think my genes are just basically messed up... is that correct? Or was it like...  a condition brought out because my body had an adverse reaction to the medication (which is what I thought happened)?

Though it may be something unrealistic right now is this something that could be helped with gene therapy if it is just messed up genes? I'm not a science-y person so maybe it's not even plausible, but I figured I might ask anyway.

Another thing I am confused about is that my spots don't turn into sores or anything, they just get dry and flake over and then they leave purpura... is that normal for this condition?

Thanks everyone.
:hugs:


bunnie

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Re: Pityriasis Lichenoides Chronica
« Reply #383 on: Friday May 09, 2008, 12:20:03 AM »
Hi You got here Needs a hug. to answer this for you...
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Also, I've been reading a lot also saying that it's an autoimmune thingy... is that to say that the medication I was on right before I got it had nothing to do with the spots? My mother believes the medicine caused the pleva as does my boyfriend... and so did I until I read this. Now I'm think my genes are just basically messed up... is that correct? Or was it like...  a condition brought out because my body had an adverse reaction to the medication (which is what I thought happened)?
All autoimmune diseases stem from mutated genes, predisposing the person to having an abnormal immune response. Normally an immune response attacks invaders of the body, but an autoimmune response attacks "self tissues", as the abnormal immune response is misdirected to self. This response can be stimulated by either internal factors , for eg. hormones , insulin,  or out of the body factors like viruses, bacteria, drugs etc. or yet again a mixture of both. The disease which manifests (there are over 80 different ones) is simply the pathogenic result of these malfunctioning immune cells. If these mutated genes are stimulated by an infection, let us say as is usual in pleva, by the staphloccus virus, then as the information in the DNA of the gene is transcribed, and made into proteins, if the gene is faulty then all the cells produced within that immune response will be faulty.
In a normal immune response to viruses etc. the Bcells produce antibodies to fight the invader. In an abnormal, autoimmune response the antibodies produced in this response, attack self tissues, and the production of them is in excess, because certain Tcells which regulate the immune response and the production of antibodies, are unable (because they are malfunctioning too) to switch the production off.
That is why some of us take immunosuppressants. Immunosuppressants do just that, they suppress the production of the abnormal antibody, but it also suppresses the rest of the immune system cells too, as these drugs are indiscriminate.
Certainly the medicine you took could have triggered this off in you, or if you were taking the medicine for a certain virus, it could have been the virus itself and not the medicine.   The medicine could have caused a  normal body substance to  alter. For example, viruses, drugs, sunlight, or radiation may change a protein's structure in a way that makes it seem foreign.
The immune system responds to a foreign substance that is similar in appearance to a natural body substance and inadvertently targets the body substance as well as the foreign substance. The majority of autoimmune diseases occur idiopathically, which means having no specific cause, spontaneous and to self. Usually if the disease was triggered by drugs or something not of the body, then it usually burns out within a much shorter time, however even this can last years in some cases.
Please see my blog for further info. on this subject if interested. There is a lot more to it.
http://wassail-allthatilove.blogspot.com/2008/03/disorders-of-immune-system-immune.html
Sorry it's long winded, but one can't possibly explain these processes briefly.
Kind regards Bunnie
« Last Edit: Friday May 09, 2008, 12:30:04 AM by bunnie »

Offline Shauna

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Re: Pityriasis Lichenoides Chronica
« Reply #384 on: Friday May 09, 2008, 07:20:26 PM »
Hi Everyone,

It is so comforting to read through everyone's posts and see the similarities in people with this disease. It is also comforting in knowing that my son is not the only one with this crazy condition.

Dylan's spots also seem a bit symmetrical. He just got 2 new spots on his left hand a few days ago; now, there are 2 new ones on his right hand. The same things seems to happen on his arms, legs, torso and back.

I wish I could just let him run around naked outside all day long. His lower arms, legs, face, and neck are free...for the most part of spots. But, his little bum, and upper legs and arms are still pretty spotty. The sun has really done wonders for the exposed skin areas. I am taking him to a new dermatologist next week. She works at Emory - a teaching university hospital in downtown Atlanta. The fact that the receptionist knew what PLEVA was when I called to make the app't was very encouraging. They see many cases of PLEVA in their office. I am hoping she will get him into some light therapy. Our current derm does not recommend it. I did take him to an office that offers the light box treatment; insurance approved. But, the woman in charge of light therapy was uncomfortable doing it on a 3 year old. So, maybe the dr. at Emory will be comfortable with it if they use that kind of therapy. I am just hopeful the light therapy will burn out the PLEVA.

Ok. I do have a question in all of this - not just babble. Dylan's spots in the beginning were very large, "angry looking," and very red. Then they sort of crusted over and were dry and flaky. Most of those faded leaving a white mark behind. These new spots he is getting are tiny and fade within days. Is this condition turning from PLEVA into PLC? Just wondering if anyone has insight on this - perhaps J, since your daughter has had her condition for so long.

And, Bunnie, how are you doing? Things have been so busy here I have not posted for a while.

Thanks,

Shauna

bunnie

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Re: Pityriasis Lichenoides Chronica
« Reply #385 on: Friday May 09, 2008, 09:10:33 PM »
Hello ShaunaHow very kind of you to ask. I'm fine thank you. The heat is killing me though! Ugh! Itch! I haven't slept all week and waking up tired. Isn't it strange how the sun helps some conditions and others not? Certainly bad for mine. I have had 2 scares with basal cell carcinomas, and both in places constantly covered, and of course I never ever go out in the sun. It's probably due to the long term immunosuppressants, all the treatments I've had have certainly taken their toll.
I can imagine how thrilled you were for the receptionist to know about pleva! I have spent all these years explaining my condition not only to GP's but some specialists too! The majority are keen to know, and now I must explain the OOKP!
I'm delighted that Dylan seems to be improving, and I hope too this new Derm will be even more promising.
I look forward to learning all that this derm has to say, it is so encouraging that she? has treat a few patients with it. Big hug for Dylan too!
regards Bunnie

Offline galpal

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Re: Pityriasis Lichenoides Chronica
« Reply #386 on: Friday May 09, 2008, 09:42:45 PM »
Hi Everyone and Many Thanks to Bunnie for the interesting info.  I will definitely click on Bunnie's research to learn more about the puberty/hgh  connection. 

I'm amazed that Shauna and J both report the symmetry with the spots.   I want to understand why, though.  I'm not sure if my daughter is still PLEVA or evolved into PLC.  She has had the condition for 18 months.  Most of her spots are like Shauna's recent description.  Small and go away fast.  She has had a few angry, deep sores (maybe 10) in the past 6 months.  The rest are more like PLC.  Her doctor is at Boston Children's and there is a grey area between the two conditions. 

I know summer is almost here so my girl is not feeling bad about it.  Also, her doc agrees that the sun exposure has a lingering effect.  We had a good 3-4 months after summer's end with no real activity.  So I'm hoping after this summer that they are burned out before winter hits.  If not, then maybe the next year. 

Fondly,

Chris


bunnie

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Re: Pityriasis Lichenoides Chronica
« Reply #387 on: Saturday May 10, 2008, 02:42:20 PM »
Hi Needs a hug,
Quote
Can someone please explain the difference in diagnosis/prognosis?
Well I can try with the diagnosis bit, but you may be bored to death! I find it a fascinating subject however. If you look on Youtube you can see animated Normal immmune responses. Very interesting! Heres the link, if not allowed please remove it.
http://uk.youtube.com/watch?v=1tBOmG0QMbA
To TRYand explain. If I may make bold the important bits, simply for noting.
Previous studies evaluating the DNA of biopsy specimens from patients with PLEVA and PLC revealed
clonal T-cell receptor β gene rearrangements.

This symbol β stands for an alpha/beta gene.
T cells are distinguished from other lymphocyte types, such as B cells and Natural killer cells (NKC's ) by the presence of a special receptor on their cell surface called the T cell receptor (TCR).
These receptors develop in the thymus through the Pos/neg selection process.
Tcell receptors
The surface of each T cell displays thousands of identical receptors (TCRs) that bind to antigen fragments nestled in MHC/HLA molecules. (Antigens from invading cells, viruses etc, can only be recognised by Tcells if they are presented by antigen presenting cells, on their MHC molecules. These MHC sometimes called HLA's -Same thing,  are self (of the host)antigens, which are on ALL cells) .
The Tcells either develop a CD4+ receptor, or a CD8+receptor  through the selection process in the thymus.  Some of them (CD4+) secrete lymphokines which act on other cells involved in the immune response. Others (CD8+, cytotoxic) are able to cause lysis (the death) of infected cells. These are Killer Tcells.
As it says in the quote above "patients with PLEVA and PLC revealed clonal T-cell receptor β gene rearrangements; this then, (as far as I understand it ) refers to the Tcells with the cytotoxic CD8+ receptor.
The alpha/beta gene is the HLA /Mhc self antigen class11, specific to the CD8+ receptor. (I think)
These "rearrangements" are called Somatic Hypermutations, and they occur naturally as the gene arrangement is altered, as the immune system aquires and adapts to each new invader it encounters throughout life. Disturbances such as somatic (relating to the body) mutations in cells of the lymphoid system could in principle give rise to forbidden clones of cells that fail to recocognise self and instead react immunmocologically with normal tissues.
Central tolerance is not always complete. It is estimated that as many as 25–40% of T cells reactive to a self-peptide escape clonal deletion in the thymus. These T cells include low-affinity, autoreactive T cells, and T cells specific for self-antigens not presented in the thymus. T cells must remain tolerant (to ignore) to harmless environmental antigens found in the respiratory tract or intestines.
The existence of autoreactive T cells into the periphery (around the body) necessitates the role for DCs (Dendritic Cells) in peripheral tolerance to prevent autoimmunity.
Killer Tcells CD8+ require a signal from a Helper tcell to activate it.  Autoreactive tcells  that have escaped the selection process in the thymus, are characterized by the expression of CD40.  CD40 is a marker associated with antigen-presenting cells, but is also expressed on this subset of T helper cells. Th40 cells are found in all individuals but occur at drastically expanded percentages in autoimmune subjects. This is true of autoimmune humans and mice. T cells are the cells, which modulate pathogenic immune responses, therefore if this killer tcell is stimulated into action by a helper autoreactive tcell , (instead of a normal helper tcell) an abnormal response will occur.  If you read in my link below, it explains the process. Read from Helper Tcells down to and including autoaggressive tcells, especially the last paragraph concerning CD40 markers on tcells. Scroll a bit and just below read also what CD markers are, and how the specific number is the marker for certain gene molecules.
http://wassail-allthatilove.blogspot.com/
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Conclusions: Our results demonstrate the polyclonal nature of the lymphocytic infiltrate found in almost all of the PLC specimens, which contrasts with the monoclonal nature found in most of the PLEVA specimens.
These differences may represent different stages of the clinical evolution  of a single entity that results from varying host immune responses to pathogenic factors. Specifically, we propose that PLEVA is a benign clonal Tcell disorder in which the clone arises from a subset of T cells in lesions of PLC. The host immune response to this clone determines the clinical and histologic findings in PLEVA.
Polyclonal:Polyclonal antibodies. A mixture of immunoglobulin molecules secreted against a specific antigen, each recognizing a different epitope
Polygenic. Controlled by or associated with more than one gene.
Monoclonal: All the same, as when gamma globulin cells (antibodies) made by plasma cells have proliferated from a single cell. Such a population of identical cells is called a "clone," and "monoclonal" means a single clone.
Monogenic -modifications in a single gene .

I am not sure but I think the actual difference could be that the polyclonal nature of the lymphocytic infiltrate in plc  may arise from infection stimulating the faulty genes, and the pleva may arise as a phenotype or a sub-class of plc, due to the Somatic hypermutation, gene rearrangement; (this gene rearrangement does produce a phenotype of a disease, as ppp is of psoriasis for eg.) the infection having stimulated an autoreactive helper tcell with a CD40 marker, resulting in this gene rearrangement!

I know its complicated, that is why I am always advocating learning about the structure and function of the immune system first, before attempting to understand malfunctions of the immune system.
Sorry! as usual I didn't realise it was so long!
Regards Bunnie

« Last Edit: Saturday May 10, 2008, 08:12:49 PM by bunnie »

Offline Shauna

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Re: Pityriasis Lichenoides Chronica
« Reply #388 on: Monday May 12, 2008, 03:15:55 AM »
Hello PLEVA and PLC'ers

I added some pic's of Dylan to the gallery. I took some of them at the worst stage of his PLEVA so far and some as the spots have started fading. It would be interesting to see and compare others with PLEVA. Let me know if any of you add photos of you or your children.

Shauna

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #389 on: Monday May 12, 2008, 05:21:23 PM »
Hi Shauna,

My daughter never had PLEVA lesions; just PLC.  The PLC lesions do not have necrosis/pussiness.  Based on my understanding of PLC vs. PLEVA, they are the same disease, just opposing spectrums.  It is apparently common for people to have both PLEVA (more acute lesions) and PLC (milder, more "chronic").  Generally, if you solely develop PLC, it doesn't turn into PLEVA; however, I have heard of PLEVA people changing into more PLC.  PLC lesions, milder, smaller, no bleeding/pussing sores.  Just a dry, spotty patch that looks reddish/pinkish.  Spots are pretty extensive, similar to your son.  Alot of times, with PLC, you can have a dry "scale" of skin that peels off the spot, making it look more "shiny", but still reddish-pink. 

I am curious what they tell you about Emory.  My old doc (who I miss!) In Boston Children's was not a proponent of light therapy for kids.  Just ambient sunlight in summer.  We live in Florida now, and have a pool.  I still put sunblock on them; the UV is pretty intense here, even with sunblock, there is a noticeable improvement. 

Please keep me posted on what they say at Emory.  I am interested, to see if it differs from my knowledge.  Thanks,

J

bunnie

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Re: Pityriasis Lichenoides Chronica
« Reply #390 on: Monday May 12, 2008, 06:10:21 PM »
Hi everyone, if I may just refer to the definition  and meaning of the medical terminology  acute and chronic. 
Both acute and chronic conditions can be either mild , severe or even fatal.

An Acute illness typically will "run its course" regardless of whether or not there is drug intervention. .

A Chronic illness is one that requires medical supervision and is often a disease that has formed over a long period of time.  Usually, medicines for chronic illnesses are regulated as Prescription Only.

Many individuals confuse the difference between an acute disease and a chronic disease. An acute disease lasts for just a short time, but can begin rapidly and have intense symptoms. In contrast, a chronic disease produces symptoms for quite some time, lasting for three months or more.

Often, people are confused as to what constitutes an acute disease. They believe an acute disease is always severe. In reality, an acute disease can be mild, severe, or even fatal. The term acute does not indicate the severity of the disease Instead, it indicates how long the disease lasts and how quickly it develops. Examples of acute diseases include colds, influenza, and strep throat.

A chronic disease is persistent. It lasts for a long period of time and may recur. Like an acute disease, a chronic disease can be mild, severe, or fatal. Examples of chronic diseases include kidney disease, cancer, and diabetes. Unlike an acute disease, a chronic disease is likely to develop over time instead of having a sudden onset.

Some acute diseases may resolve themselves, without requiring significant medical attention or treatment. For example, an individual may recover from influenza at home, without taking prescription medications or requiring the care of a physician. Pneumonia, on the other hand, is an acute disease that often requires medical care and prescription medication. Frequently, hospitalization is required as well.

Chronic diseases often require the care of a medical professional and the use of prescription medications. Sometimes, hospitalization is required as well. For an example, an individual with diabetes may need to see a doctor on a regular basis and take prescribed medications. An individual with kidney disease may require professional medical care, medication, and dialysis. Frequently, medical intervention may make an individual with a chronic disease more comfortable, but usually chronic diseases cannot be cured.
Regards Bunnie




« Last Edit: Monday May 12, 2008, 09:31:04 PM by bunnie »

Offline Samuel9817

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Re: Pityriasis Lichenoides Chronica
« Reply #391 on: Tuesday May 13, 2008, 01:31:33 AM »
Hi I'm still new here and learning about this disorder. Has anyone else been on tetracycline and did it help. It doesn't seem to do much for me but my Dermatologist thinks it will eventually. I've been on it since December of last year. I decided to try Palmer's Cocoa Butter for the spots, does anyone use that also ??

Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #392 on: Tuesday May 13, 2008, 09:18:41 AM »
Hi I'm still new here and learning about this disorder. Has anyone else been on tetracycline and did it help. It doesn't seem to do much for me but my Dermatologist thinks it will eventually. I've been on it since December of last year. I decided to try Palmer's Cocoa Butter for the spots, does anyone use that also ??

Hey Samuel I also used Tetracycline and it seemed to help me. I would advise maybe increasing the dose. I was taking 2 - 2x daily.

Offline Shauna

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Re: Pityriasis Lichenoides Chronica
« Reply #393 on: Tuesday May 13, 2008, 03:19:13 PM »
Quote
Please keep me posted on what they say at Emory.  I am interested, to see if it differs from my knowledge.
J,

I will let you know what they say at Emory. I do not think light therapy is recommended for young children as they could be burned or hurt their eyes if they were to remove the goggles. I am just interested in this doc's treatment plan. She sees PLEVA a lot in her office - or so the receptionist tell me.

Also, I added pic's of Dylan on the gallery under general skin conditions. Is this what your daughters skin looks or looked like? Just curious.

Shauna

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #394 on: Tuesday May 13, 2008, 05:15:58 PM »
Shauna,

I saw the pictures!  Your son is so adorable.  His milder lesions look very similar to my daughters'.  However, the tops of her arms are never as afflicted as the undersides, and, esp, on the upper/back of arms.  (Although, the lesions are extensive, just milder in certain areas).  She has never had the PLEVA version.  It is so good to talk with other PLEVA/PLC parents and share information/insight, esp. from one mother to another.  I look forward to hearing about how Emory goes. 

Sincerely,


Offline Shauna

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Re: Pityriasis Lichenoides Chronica
« Reply #395 on: Tuesday May 13, 2008, 06:13:07 PM »
J,

Glad you viewed the pic's. And, yes, I think he is adorable too.. but I am biased.

So, he must have PLEVA lesions if your daughter was diagnosed with PLC and has milder lesions. Or, maybe he has both. I have heard of PLEVA develping into PLC. AH, how confusing. I will find out more tomorrow at Emory. I will let you know what I find out.

Shauna

bunnie

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Re: Pityriasis Lichenoides Chronica
« Reply #396 on: Tuesday May 13, 2008, 10:07:37 PM »
hi shauna, Dylan is so cute! I found this medical article interesting concerning the differences of the two, although pleva is a phenotype of plc, (and febrile ulceronecrotic Muchas-Habermann disease is a subtype of pleva) it says here that pleva has itchiness, painful lesions and irritabilty whereas plc does not. Don't know if that is typical or not?
Bunnie
http://dermnetnz.org/scaly/pityriasis-lichenoides.html

Offline Shauna

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Re: Pityriasis Lichenoides Chronica
« Reply #397 on: Wednesday May 14, 2008, 02:18:13 AM »
Hey Bunnie!!

Thanks for the article. I had read one similar to that before. Unfortunately, I never understand most of what I read in those things. It does seem to me that Dylan may have lesions consistent with both PLEVA and PLC. Some of his itch; some never bother him at all. Some are very small and fade in days; others get very large and develop that central scab that the article referenced.

Luckily, he is still doing really well with this. I really don't think he even notices his "bumps" at all. His exposed skin areas are fairly clear. A stranger looking at him really would not notice anything at all. The parts that are covered by clothing are still pretty spotty though. I just hope with summer and swimming -they will fade too. I just cannot help but worry about the chance it could develop into some sort of skin cancer. I try not to think about that, but it is hard.

Anyway, glad you liked the pic's. Oh, and sorry to hear about your itchiness. It must be hard having to stay out of the sun. Can you go out if you are completely covered - hat, long sleeves, long pants, etc.?

Talk to you soon,

Shauna

bunnie

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Re: Pityriasis Lichenoides Chronica
« Reply #398 on: Wednesday May 14, 2008, 01:32:39 PM »
Hi Shauna, The very very rare odd case Shauna has proven to develop a more serious aspect, but so rare as to be considered  irrelevent, from what i have read anyway. You see the individual must also have active cancer cells. The predisposition to cancer does tend to run in families, but even then , not all of those individuals will develop it ever, in any shape or form. Do try not to worry about that Shauna. You see this is why I try to encourage people to understand how the immune system works, because it answers the simple questions that we all have, and puts the situation into perspective.
Quote
Can you go out if you are completely covered - hat, long sleeves, long pants, etc.?
Oh I do! but its the heat Shauna!  Ugh!  I feel so lethargic, and a bit nauseus actually when I get too warm. I'm covered with blisters all around my neck , one or two on my chin, and under boobs etc. All the warm places!  My legs and feet are swollen, at the best of times, but now each toe is like a little sausage! My feet are so swollen they throb! Roll on September!!
Good wishes Bunnie

Offline Shauna

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Re: Pityriasis Lichenoides Chronica
« Reply #399 on: Thursday May 15, 2008, 02:52:49 PM »
Quote
Please keep me posted on what they say at Emory.  I am interested, to see if it differs from my knowledge.  Thanks,

J

We had our visit at Emory yesterday afternoon. It went well; the doctor was very friendly and encouraging. But, she basically told me the same thing our current pedi derm has been saying - that this could last for a while, probably a few years and they do not recommend light therapy. She said with it being summer, he will most likely completely clear with a few lesions returing in the fall/winter. She said that Dylan should stay on the erythro for another 1 to 2 months until he is mostly clear and see how his skin does. The typical treatment is to go back on the erythro if there is another outbreak until it clears the skin and then go back off. So, on again off again is what they recommend and loads of sunlight. She recommended letting him out with no sunscreen except on the tops of his shoulers where most people get burned. She also said she believes PLEVA/PLC is caused by a virus or it is a virus. So, that makes me wonder if I should let him take something to boost his immune system to rid his body of this virus. Bunnie, you can proabably answer that for me. Please and thank you.

So, bottom line is that we are going to stick with our current pedi derm as he is only 15 minutes away; Emory is a good 45. The doc at Emory said this treatment plan Dylan is on is the exact same as she would prescribe. She apparently is friends with Dr. Caputo, the doc we have been seeing. They flip-flop patients a lot. That makes me feel good. They are both great at what they do and seem to be very knowledgeable. The doc did say this disease could linger on for quite a while but that he will not always have it. It will go away eventually. In one of her rare cases, she has a patient who has had it since she was 3 and is now 27. But, that is apparently RARE. But, so is PLEVA in itself, so that is not comforting to me.

That is all I found out. Let me know if you have more questions.

Shauna