Author Topic: Pityriasis Lichenoides Chronica  (Read 552577 times)

0 Members and 1 Guest are viewing this topic.

bunnie

  • Guest
Re: Pityriasis Lichenoides Chronica
« Reply #400 on: Thursday May 15, 2008, 11:12:00 PM »
Hi Shauna, please take a look at post 383, that is what a normal immune response, and an abnormal (autoimmune) response is. Think of these responses as being like "the switching on" of the defence mechanisms of our bodies.
Every cell of everything , carries self markers of the host, in animals and humans.  These cells of the host (your body)carrying *self *antigens, are normally ignored by the cells of the immune system. Any cell entering the body which of course does not have these markers , is therefore "foreign" and will trigger an immune response.
In a normal response an invader or something  from outside the body, does not carry markers on their cells, of your own body, (called Human Leukocyte Antigens, HLA's) and will be attacked and destroyed.
An autoimmune response is switched on in the same way, but it attacks cells which DO have these markers, in other words the response or the "switching on" of our defence system, is mounted against self cells. The response in this case stimulated by a combination of mutated genes, factors from outside the body, or inside , or a mixture of both. The mutated genes are transcribed into proteins and as the genes are faulty so are the proteins and each subsequent cell of that immune response malfunctions. The pathogenic result of that is the condition manifest.

Atopy is the same, except that this is a genetic predisposition to having an allergic / hypersensitivity  reaction to  things which are normally harmless. As a virus is usually harmful to a human body, I do not think  pleva or plc could be Atopic.
Not everyone carrying these mutated genes predisposing the person to autoimmunity, or atopy, or both! will ever have a reaction , they are just more likely to, if a specific combination of factors occurs, resulting in an autoimmune response, or if a person has the Atopic genetic predisposition, stimulated by a specific normally harmless allergen.   You can have both of course.
The literature on PLC and Pleva states in some articles that it is triggered by a virus, and that the majority are known to have some kind of Atopic condition. Atopy runs in families.
Dylan must therefore carry mutated genes predisposing him, in the presence of a combination of these genes and this particular virus to having this abnormal response. The pathogenesis of this response to the virus in Dylan  is obviously pleva. It might be a different virus altogether stimulating this response, resulting in pleva, in another person.

A virus, can stimulate any autoimmune condition, but only in a person carrying mutated genes predisposing them to autoimmunity.
A normal body substance can be  altered by the virus. For example, viruses, drugs, sunlight, or radiation may change a self protein's structure  (the HLA's as mentioned above) in a way that makes it seem foreign. A response is mounted, these genes transcribed, and then all the cells of that response malfunction.
Anything presented as foreign to Tcells and Bcells, is marked for destruction. The bcells produce antibodies , these are the soldiers which latch on to destroy the invader. In an autoimmune response the bcells (because they are stimulated by malfunctioning cells) are also malfunctioning, and they produce abnormal antibodies, (autoantibodies) which are capable of latching on to self cells carrying these markers which now appear foreign because of the virus.
Furthermore the Regulating Tcells also malfunctioning (due to the same reasons as the bcells) are unable to switch off and bring the response to an end, as in a normal immune response, therefore the whole abnormal response is in overdrive. The abnormal antibodies (Autoantibodies) which have latched on to the autoantigens  (self antigens  which were altered by the virus) because the production cannot be stopped, form veil like structures called immune complexes and can be seen deposited in the skin in some conditions such as my own.
Quote
I should let him take something to boost his immune system to rid his body of this virus.
Thats the last thing he needs Shauna it is already in overdrive! His Immune system you see is not deficient.  Immunodeficencies  occur when the body does not produce a component of the immune system from birth or ceases to function due to serious disease. You can read this in my blog near the beginning on the link "disorders of the immune system". 
The immune system is working very well, it's just that these particular genes simply carry this predisposition.
If its not an autoimmune condition then maybe Dylan has a genetic predisposition to having an allergic response to this specific virus? I remember you saying that the doctor said it had nothing to do with the immune system, but if it hasn't, then Dylan would not have this rash! Certainly it is an immune response to something, be it an autoimmune one or not. Was that ever clarified by the derm Shauna?
bunnie
« Last Edit: Thursday May 15, 2008, 11:22:16 PM by bunnie »

bunnie

  • Guest
Re: Pityriasis Lichenoides Chronica
« Reply #401 on: Friday May 16, 2008, 01:03:52 PM »
May I just add to that above Shauna, in case I didn't make myself clear.
The virus will have been dealt with by this response by now, otherwise Dylan would be really ill, the virus having taken over. However that is not the case, Dylan in himself is perfectly healthy other than this rash affecting his skin, and this is because as yet the abnormal response has as yet not come to an end. These regulating Tcells need to receive the "signal" to stop the response. Even if it has stopped it takes a long time for the immune cells to clear away the debris. This is probably why the derm is saying it will burn itself out eventually. Does that make sense to you?
I don't know if immune complexes are seen in biopsy in pleva or plc, I'm sure they do , but I will check it out. Whenever a normal (or abnormal) antibody joins with an antigen ,(normal or abnormal) it marks it for destruction, by other cells of the immune system. This  Ab +Ag "joining"  is called  an "immune complex". An over production of autoantibody causes clusters of immune complexes amassed together like a "veil". These become deposited in the skin and of course inflammation and damage occurs.

Just a bit more as to how a virus can stimulate this response asI have already explained in my previous post.
Infectious agents are the most often cited environmental factors implicated as triggers of autoimmune diseases. Despite these leads, the exact mechanisms by which infection induces a particular autoimmune disease are unknown. An antigen of the micro-organism (virus ) may resemble a self antigen (Hla's) present on  cells of the body, but to just one particular set of cells, for eg. proteins of the skin. A cross-reactive immune response to the infecting micro-organism, causes immune-mediated damage to the cells of organs or skin. Cross-Reaction activates T and B cells. When the infection is under control, these cells may then turn against self antigens.
This phenomenon is referred to as molecular mimicry.
Molecular Mimicry occurs when a normal body substance is altered as explained in my previous post and above. 

Likewise an exogenous antigen may share structural similarities with certain self antigens ( HLA's); thus, any antibody produced against this antigen can also, in theory, bind to the host antigens, ( HLA's) and amplify the immune response.

Bunnie
« Last Edit: Saturday May 17, 2008, 08:57:34 PM by bunnie »

Offline BLX42

  • Junior Member
  • **
  • Posts: 58
  • Gender: Male
Re: Pityriasis Lichenoides Chronica
« Reply #402 on: Monday May 19, 2008, 02:07:11 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:



Hi. Sounds like you're a teenager. Been there as a teenager with PLC. One of the frustrations I had was the  lack of real knowledge about Pleva/PLC. There is a lot of stuff about immune-this and immune-that ... but basically the doctors could only diagnose (identify) the syndrome via biopsy, and give a general prognosis (prediction) of four to 12 years, may clear up and come back, etc. As one doctor confessed to me, when you don't know the cause or cure, call it autoimmune and give it a big important-sounding name.

The only thing that ever worked for me was to get a suntan. Years later, a derm told me that that was the state of medical knowledge on cure, which they discovered by observing patients who came back from the beach with all their sores gone except those under the bathing suit.

Another derm told me I'd have to go to his office for special UV treatments at about $100 a pop. I went to a tanning salon instead, at $10 a pop, which worked fine. (Unfortunately, the beach doesn't catch the sores under the bathing suit, and what do you do in winter?) I found that I ddn't have to get brown as a nut, just get a light tan from once or twice a week in a booth. That doesn't present much of a risk from UV, and it does solve the problem.

After all, that's what you really want to do ... solve the problem, not understand it. Hope this helps.

Offline godlyrooted

  • Registered member
  • *
  • Posts: 8
  • Gender: Male
Re: Pityriasis Lichenoides Chronica
« Reply #403 on: Monday May 19, 2008, 08:45:50 PM »
i have tha cure for plc, i had it for 4 years and i finally found a med that worked 4 me, its called doxycline hyclate. just take it for 3 months, one pill a day. and its cheap med 2 like 7 dallors for 30 pills. and when your takin durin the 3 months u need to know it will look worst 4 a min, cause when i was takin it i noticed it was spreadin in diff areas i never seen it spead before but i still took the med anyways, and after the three months pretty much as soon as i got off it, and them lesions stop. thank god no more of that. it worked for me so maybe it will work 4 u, it wouldn't hurt to try right. if u want to get rid of that cursed desease......

Offline galpal

  • Registered member
  • *
  • Posts: 24
Re: Pityriasis Lichenoides Chronica
« Reply #404 on: Tuesday May 20, 2008, 03:20:14 AM »
Hi Everyone,

I just checked out Dylan's  pics and they look just like my daughter's pics.  I posted a pic minus the plevers.  I did take some when they were at their worst but I'll have to see if I can find them-probably still in my camera.  Now we have the red/purple scars which can be quite large on the pleva sores.  The red scars turned white last summer.  She doesn't tan so the white spots weren't a big deal.  The plc spots aren't so noticeable. 

Some of the bad plevers left a chicken pox- like scar which have not gone away with time.  I still have my chix pox scars so I'm thinking that hers are permanent.  Next time her face is affected, I will get her to a tanning booth right away because the scarring is no fun.

Things look quiet right now.  Hope everyone is improving with the sun.  It is great that Godlyrooted had such a great response to the antibiotic.  My Doc said that 67 percent respond to the Erythro/Tetracyline treatment within 90 days (I remember being so sure we would be in that group!) so that would be him.  I'm assuming doxycline is similar due to the same suffix.

Chris

Offline Shauna

  • Junior Member
  • **
  • Posts: 71
  • Gender: Female
  • Dylan 3 yrs. old
Re: Pityriasis Lichenoides Chronica
« Reply #405 on: Wednesday May 21, 2008, 07:06:08 PM »
Hi.

So nice to read everyone's posts and different experiences with PLEVA/PLC. Dylan is still on erythro, and  has been since late January, so almost 4 months. My derm still says it is safe to keep him on and wants to until all the lesions are gone. I am just putting my trust in him. He has never told me the erythro is a cure though. He just said it cuts down on inflammation while the disease burns itself out. It may prevent the redness and scarring. Not sure on that though. I had never heard about the erythro working in 90 days. My derm just said some cases can be stubborn and hang around longer than others. I am sure Dylan will be clear this summer. The sun has already done wonders for his arms and legs. I only hope he will stay that way come fall/winter. If he looks like he did with his first outbreak, I may lose my mind. I cried daily during that time (never in front of him) and checked him all the time to see where new spots were forming. AH. It was so aweful.

Bunnie, thanks for your information. You are like a book. You have so much knowledge. Anytime I forget to ask the derm something at an app't, I just send it to you. Thanks so much.

Shauna




bunnie

  • Guest
Re: Pityriasis Lichenoides Chronica
« Reply #406 on: Wednesday May 21, 2008, 08:01:46 PM »
Hi Shauna, the thing is did you understand it? I don't like asking that, because by doing so it is like presuming that people have not got the intelligence to understand it, and as you know, I never presume that, otherwise I would not bother to explain it. That presumimg attitude is a pet hate of mine! Doctors are notorious for it, they presume the patient cannot really understand the problem, so they give an overview, which the patient takes on board , but it is so easy to misunderstand what they are really saying, from a brief explanation. It isn't a brief subject!
That is the way I offer my support here, and one of the reasons why I believe it is so important to understand these processes. Had I personally not endeavoured to learn, I guess I would  be in a far sorrier state than now, (if that is possible!) I appreciate that everyone has a different approach to their illness however.
I have often said to my specialists, that it is a pity my disease was happening to me, because I cannot help but be fascinated by the process, and my own derm in particular has always replied, " Who better to learn than a person experiencing the processes of these abnormal responses?" His face lights up if I ask about anything in particular, he loves the fact that I am keen to understand. I even say "hold on , until I write that down!"
Anyway you did ask, so I hope it helped.
You have said something very poignant Shauna,
Quote
I am just putting my trust in him.
You have to shauna, when you are between a rock and hard place. You need somebody "on your side", understanding the problem and dealing with it in the best way possible for Dylan.
Quote
My derm just said some cases can be stubborn and hang around longer than others.
That occurs in many cases of all the different manifestations of these abnormal responses, and at least the derm is being honest with you.
Quote
I cried daily during that time (never in front of him) and checked him all the time to see where new spots were forming.

Aw-w Shauna, it must be awful watching and caring for a child with these conditions, but all you mums are coping magnificently aren't you? Thats because you are " mummy" and you have to. I never felt very efficient  nursing children, (although I spent 2 years night duty nursing children with severe abnormalities, bless them,)  I spent most of my time in tears! What made it worse I was pregnant myself toward the end of those 2 years and the reason I left of course.
Bunnie

Offline Shauna

  • Junior Member
  • **
  • Posts: 71
  • Gender: Female
  • Dylan 3 yrs. old
Re: Pityriasis Lichenoides Chronica
« Reply #407 on: Thursday May 22, 2008, 09:18:32 PM »
Bunnie,

I, for the most part, understood your posts. I had to read and re-read and re-read again. I checked out #383 as you suggested as well. So, from what you wrote, Dylan's immune system is over-functioning, attacking invaders that really are not invaders. I get that. I mean, he would be sick if his immune system had not kicked out the virus - if it was a virus that triggered this. So, how or what gives the Tcells the signal to stop the abnormal response? I just feel like I am not doing enough to help his little body get rid of this. I know the doc keep saying to get in the sun and let it "run its course" and burn itself out. That is hard to do as a mom. I just feel like I need to be doing more.

And, I read a bit of your post under your condition in regards to Grayson. His mom was asking about allergies. Could Dylan have an allergy that causes the PLEVA to flare up at times? Should I have him tested or keep a food diary? Just curious.

Anyway, our pool in our neighborhood is about to open this weekend. I plan on having Dylan there daily, if possible. Hope that helps.

Shauna


bunnie

  • Guest
Re: Pityriasis Lichenoides Chronica
« Reply #408 on: Friday May 23, 2008, 12:36:54 PM »
I wish to Thank you Shauna for reading those long posts, and endeavouring to understand these processes. You are absolutely correct, and I'm so pleased you have realised it,that is the way I learn too, reading it over and over, checking and rechecking. The reason I give the info, is because the knowledge answers all the obvious questions, as to "why". You have obviously understood what I wrote, I made it as simple as possible, the danger of doing that though is that people can often misinterperate the simple explanation, as I said in a previous post. It is a very complicated subject, and of course as it is in research still, we can only learn where science is at , at this point.
You have made some very valid points which all sufferers of autoimmune disease or Atopy, actually mention to the derm at some point.
Quote
So, from what you wrote, Dylan's immune system is over-functioning, attacking invaders that really are not invaders. I get that. I mean, he would be sick if his immune system had not kicked out the virus - if it was a virus that triggered this.
Precisely Shauna.
Quote
So, how or what gives the Tcells the signal to stop the abnormal response?
Thats what scientists are in the process of discovering shauna! If only it was known how to stop it! 
Under normal circumstances, these  regulating/suppressor Tcells, through chemically signalling bring any immune response to an end. You see all these cells of the immune system not just Tcells,
 "communicate and interact" with one another ,by releasing chemicals which act as a signal to the other cell in question, causing them to be activated, thereby releasing other cells, or undergoing another process, killing them outright, or simply sending them off to do another job. Some of these cells can even give themselves a signal to commit suicide!
If you wish to learn a bit more, do just what you did before Shauna, take your time, don't be put off by sometimes unpronouncable words, just take from it what you can.
http://wassail-allthatilove.blogspot.com/
Scroll down to Tcells. Forget about the numbered and lettered markers (they only identify the gene) for the present, just read the bits inbetween.
Read in particular, the types of Tcell which start as 1) helper Tcells. Scroll down to no.2) and especially 5) 6) and 7). Then scrolling further, read "Disorders of the Immune System". It explainf everything that can go wrong, and to which cell processes, research is specifically directed.
Quote
I just feel like I am not doing enough to help his little body get rid of this. I know the doc keep saying to get in the sun and let it "run its course" and burn itself out. That is hard to do as a mom. I just feel like I need to be doing more.
Indeed it is hard for everybody Shauna, and that is why people often try other non-medical treatments. I have done it myself! It is the innate need to help one's self. Acceptance is very hard Shauna, especially for a mother, but there is no other choice. If you can try to move your mind-set from that, acceptance then becomes a positive reaction. I personally, unable to help myself in any other way, tried to remove that dreadful feeling of hopelessness really, by putting all my energy into learning all that I could about these two subjects, and the knowledge "empowered" me. I trust you get my meaning? The more I could understand and discuss these processes with my derm, the more open and interested he became in discussing it with me, and indeed the many other specialists too, involved in my case. As nearly all of them have said at some point or other, "people with rare conditions must often become their own doctor in the abscence of their specialist" How very true that is.
However, whether or not it is an autoimmune disease, Atopy, or a genetic allergy to a specific virus, this reaction is abnormal, and until a drug can be found to alter the transcription of these genes then nobody can have a solution to their specific problem. The reaction though will stop exactly as the derm says, it will burn out. I know my derm believes (through his experience ) that my condition is very slowly burning out now.
Quote
Could Dylan have an allergy that causes the PLEVA to flare up at times? Should I have him tested or keep a food diary? Just curious.
Well of course that can only be answered by Dylan's derm Shauna. Certainly, any allergy to anything can exascerbate any other skin problem , causing it to flare, BUT remember, if the condition is autoimmune or atopic, it will of itself, being a symptom of genetic predisposition alone, wax and wane in severity, idiopathically, ( spontaneous, of itself) or have long or short periods of remission; another main reason why people are often fooled into thinking that specific diets have worked for them, when in fact it is only the way autoimmunity and atopy function. ( please don't anybody reading jump down my throat at that last sentence, that is the view of medical science, people have the right to believe what they want, and frankly I couldn't care less which path they choose.)The thing is Shauna, Dylan never showed a reaction to anything he ate  prior to this outbreak did he? and unless you have drastically altered his diet then that cannot be a factor can it? To eat healthily of course goes without saying.
kind regards Bunnie
« Last Edit: Friday May 23, 2008, 01:22:44 PM by bunnie »

Offline Shauna

  • Junior Member
  • **
  • Posts: 71
  • Gender: Female
  • Dylan 3 yrs. old
Re: Pityriasis Lichenoides Chronica
« Reply #409 on: Friday May 23, 2008, 10:29:18 PM »
Thanks so much Bunnie. You should go to med school. It sounds like you really love learning about this stuff. Me, not so much. I was not a fan of science classes in school. I am more interested now because of Dylan. But, to sit and read and research like you, no way. I will just ask you questions and let you tell me the important stuff.  ;)

So, I think I may keep a food diary just to see if he does flare up with certain foods. The doc once told me that he may not have an allergy to a certain food but just a bit of an intolerence. ??

Anyway, need to run. Thanks again and I will keep you informed of his condition as is "waxes and wanes."

Shauna

Offline anndrew

  • Registered member
  • *
  • Posts: 42
Re: Pityriasis Lichenoides Chronica
« Reply #410 on: Wednesday May 28, 2008, 03:37:10 AM »
Has anyone on this board tried taking bromelain for three months?  I just read a study in the magazine Life Extension.

bunnie

  • Guest
Re: Pityriasis Lichenoides Chronica
« Reply #411 on: Wednesday May 28, 2008, 11:14:57 AM »
Hi Shauna,
Quote
he may not have an allergy to a certain food but just a bit of an intolerence. ??
An "intolerance" to something would have shown up before now, and any response would have manifested on its own. You see anything amiss would show up in Dylans blood specs. A full blood spec is done regulary usually, with these conditions, this is the map and main diagnostic tool of the physician.
If Dylan or anybody, had any intolerance , allergy, anything, it would be apparant. If anybody needed supplements or essential nutrients, the deficiency would show up in his blood specs.

There is no well founded scientific tests done on this stuff as noted in this link.
http://www.nlm.nih.gov/medlineplus/druginfo/natural/patient-bromelain.html
A quote from one of the links I have left. He is absolutely bang on!
Quote
Some facts:
a) There is something called levels of evidence, a universally accepted system of evaluating studies, according to their methodology and hence the validity of their results: This study is a systematic review (meta analysis) hence Level 1 - the highest level of evidence
 b) Cochrane collaboration is the most respected source of clinical evidence worldwide, and set the standards , 20 years ago, for systematic reviews. It is a non profit , international organisation.
If these essential nutrients are all at normal levels why take supplements? Wasting money, and more than likely causing yourself more harm than good! It's crazy!
To give a child them I would say is out of the question, the doctor would soon add them if Dylan or anybody needed them.
Furthermore it is dangerous  in the long term to "doctor" yourself when anyone has an obvious condition like this. Treatment is based on the body as is, but if you go adding stuff, you are altering what is known about the patient. I know for a fact that some derms when informed that the patient is taking this or that supplements , just say its ok. Usually this is because what they are taking is insignificant, but as a placebo effect it does the patient good to allow them to continue thinking that they are "helping".  I have asked numerous specialists this many times.

However, here in the UK at present, there is much in the media about people doctoring themselves with these supplements, and proving how dangerous it can be in the long term. Please note the dates!
http://www.independent.co.uk/life-style/health-and-wellbeing/health-news/vitamin-supplements-do-us-no-good-and-may-be-harmful-809607.html
http://www.bupa.co.uk/health_information/html/health_news/300408_vitamin_supplements.html
please note that BUPA is the main private insurers for medical care in the UK (for those who prefer to go private and not use the NHS,( the only difference they get is a private room, and to jump the queue!)
http://www.bbc.co.uk/sn/tvradio/programmes/horizon/vitamins_trans.shtml
The BBC horizon programme  (a very popular research  programme in the UK) above link, very interesting!
They are also noted to alter the processes of medication, and very seriously in the case of some of them.

You ARE helping Dylan Shauna, simply by being sensible about this, and checking the known facts about these processes. Here is an explanation of the differences between an allergy and an intolerance but please note that these symptoms are very obvious!
Food intolerance is a chemical reaction (This refers to body chemical reactions, not chemicals as we normally refer to chemicals!  A more understandable explanation would be maybe acting  as  stimuli or stimulus)
Food intolerance is a ‘chemical’ reaction that some people have after eating or drinking some foods; it is not an immune response. (a normal response) Food intolerance has been associated with asthma, chronic fatigue syndrome and irritable bowel syndrome (IBS). Food intolerance is much more common than food allergy. The word "association" in this context means it is "sometimes seen as a symptom of."
The Symptoms can be similar.....
It can be difficult to tell the difference between the symptoms of food allergy and food intolerance. Usually symptoms caused by food allergy develop very soon after consuming the food but, while symptoms caused by food intolerance can be immediate, they may also take 12-24 hours to develop. Food intolerance reactions are usually related to the amount of the food consumed. They may not occur until a certain amount (threshold level) of the food is eaten, but this amount varies for each person.
Symptoms of food intolerance can include:
Nervousness, tremor
Sweating
Palpitations
Rapid breathing
Headache, migraine
Diarrhoea
Burning sensations on the skin
Tightness across the face and chest
Breathing problems - asthma-like symptoms
Allergy-like reactions.
Any of these would be clearly visible, both physically and pathologically.
So unless any of this is happening, then Dylan is ok.
« Last Edit: Wednesday May 28, 2008, 12:54:21 PM by bunnie »

Offline anndrew

  • Registered member
  • *
  • Posts: 42
Re: Pityriasis Lichenoides Chronica
« Reply #412 on: Monday June 02, 2008, 12:12:43 AM »
Supplements.  One could see a nutritionist, like I do,  and take supplements.  I started a month ago and things seem better. 

Offline ely0325

  • Registered member
  • *
  • Posts: 3
Re: Pityriasis Lichenoides Chronica
« Reply #413 on: Friday June 06, 2008, 01:13:24 PM »
Hi Everyone!

I'm a new here and I was diagnosed with PLC one year ago. I am now 21 and it's so difficult to live with this rare skin disease. I've tried tons of creams, antibiotics including tetracycline and prednisone but it seemed to make it worst, and I've done phototherapy which seemed to help a little. I actually stopped tanning and they seem to reappear again. How long does this usually last? and what would be the bestway to survive during the summer? My rashes cover every part of my body except my face and neck, I started getting some there but phototherapy actually stopped it from growing. I feel that it has affected my social life and it is very stressful. I'm glad to see that I am not the only one but I am very saddened to know that so many suffer from rare diseases like this one. At the time I got PLC I noticed I lost a lot of weight, did this happen to anyone? I'll appreciate f anyone can help me with this situation. I heard that skin rashes are affected by a bad liver, is it true???

Offline PLC4ME

  • Junior Member
  • **
  • Posts: 54
Re: Pityriasis Lichenoides Chronica
« Reply #414 on: Friday June 06, 2008, 01:48:00 PM »
Hi Everyone!

I'm a new here and I was diagnosed with PLC one year ago. I am now 21 and it's so difficult to live with this rare skin disease. I've tried tons of creams, antibiotics including tetracycline and prednisone but it seemed to make it worst, and I've done phototherapy which seemed to help a little. I actually stopped tanning and they seem to reappear again. How long does this usually last? and what would be the bestway to survive during the summer? My rashes cover every part of my body except my face and neck, I started getting some there but phototherapy actually stopped it from growing. I feel that it has affected my social life and it is very stressful. I'm glad to see that I am not the only one but I am very saddened to know that so many suffer from rare diseases like this one. At the time I got PLC I noticed I lost a lot of weight, did this happen to anyone? I'll appreciate f anyone can help me with this situation. I heard that skin rashes are affected by a bad liver, is it true???


Hey ely,

I'm sure a bad liver could cause some rashes to an extent depending on the severity of the damage or mutations. But I think PLC is caused by a different thing all together. Stress is bad, as it increasings your cortisol levels in your blood and this can have numerous effects on your body. So make sure you drink lots of herbal teas, listen to Tchaikovsky and relax. Getting lots of sun is the best thing, along with a good diet, foods with lowGI and high in fibre are usually good. I would give the antibiotics another go, maybe at a higher dosage. Make sure you are taking them correctly, I think some require you to take them with food. If you don't they will pass through unabsorbed. I didn't have any spots on my face or neck either, but my neck did get a few now and then which didn't last very long, so whats up with that? lol.

All the best,
PLC4ME

Offline Samuel9817

  • Registered member
  • *
  • Posts: 5
Re: Pityriasis Lichenoides Chronica
« Reply #415 on: Friday June 06, 2008, 07:51:59 PM »
Hi Everyone!

I'm a new here and I was diagnosed with PLC one year ago. I am now 21 and it's so difficult to live with this rare skin disease. I've tried tons of creams, antibiotics including tetracycline and prednisone but it seemed to make it worst, and I've done phototherapy which seemed to help a little. I actually stopped tanning and they seem to reappear again. How long does this usually last? and what would be the bestway to survive during the summer? My rashes cover every part of my body except my face and neck, I started getting some there but phototherapy actually stopped it from growing. I feel that it has affected my social life and it is very stressful. I'm glad to see that I am not the only one but I am very saddened to know that so many suffer from rare diseases like this one. At the time I got PLC I noticed I lost a lot of weight, did this happen to anyone? I'll appreciate f anyone can help me with this situation. I heard that skin rashes are affected by a bad liver, is it true???


Hey ely,

I'm sure a bad liver could cause some rashes to an extent depending on the severity of the damage or mutations. But I think PLC is caused by a different thing all together. Stress is bad, as it increasings your cortisol levels in your blood and this can have numerous effects on your body. So make sure you drink lots of herbal teas, listen to Tchaikovsky and relax. Getting lots of sun is the best thing, along with a good diet, foods with lowGI and high in fibre are usually good. I would give the antibiotics another go, maybe at a higher dosage. Make sure you are taking them correctly, I think some require you to take them with food. If you don't they will pass through unabsorbed. I didn't have any spots on my face or neck either, but my neck did get a few now and then which didn't last very long, so whats up with that? lol.

All the best,
PLC4ME


I agree with plc4me, I have had PLC for a while now also. I have been on Tetracycline for a while now. I recently told my Dermatologist that maybe I should stop taking it because it doesn't seem to work. He declined and I continued taking it, it now seems to be working . Make sure you take it with a meal , I noticed that from time to time I loose weight and appetite. Also you might want to try Palmers Cocoa Butter which had helped me with the dark spots that remain .  Good Luck!!!!

Offline BLX42

  • Junior Member
  • **
  • Posts: 58
  • Gender: Male
Re: Pityriasis Lichenoides Chronica
« Reply #416 on: Friday June 06, 2008, 08:35:56 PM »
Hi Everyone!

I'm a new here and I was diagnosed with PLC one year ago. I am now 21 and it's so difficult to live with this rare skin disease. I've tried tons of creams, antibiotics including tetracycline and prednisone but it seemed to make it worst, and I've done phototherapy which seemed to help a little. I actually stopped tanning and they seem to reappear again. How long does this usually last? and what would be the bestway to survive during the summer? My rashes cover every part of my body except my face and neck, I started getting some there but phototherapy actually stopped it from growing. I feel that it has affected my social life and it is very stressful. I'm glad to see that I am not the only one but I am very saddened to know that so many suffer from rare diseases like this one. At the time I got PLC I noticed I lost a lot of weight, did this happen to anyone? I'll appreciate f anyone can help me with this situation. I heard that skin rashes are affected by a bad liver, is it true???


Phototherapy is the ONLY thing that worked for me. It is also the only thing that is proven to work. You will need to continue it until the PLC goes into permanent remission, anywhere from 4 to 12 years. Mine lasted ten. However, phototherapy isn't so bad. You spend ten minutes twice a week in an ordinary tanning booth, and you're nicely tanned all over with no ulcers. That should help your social life. If twice a week doesn't cut it, try three times. You may have to increase exposure time as you tan.

Getting a light tan without a burn holds very little risk. Like many things in life, moderation is the key.

Antibiotics and creams didn't work, and reports of partial success are probably due to the fact that PLC comes and goes.

Offline ely0325

  • Registered member
  • *
  • Posts: 3
Re: Pityriasis Lichenoides Chronica
« Reply #417 on: Monday June 09, 2008, 02:41:42 PM »
Thank you very much for your responses!! :D I've been tanning outside my backyard and I hope that would help. BLX42, you said yours lasted 10 years, was it on/off or you had it the whole time and when did you start with phototherapy.I am very curious to know how it works and why does it last so long. Mine actually started getting red again this week and I believe it can be because of the hot weather but I am not really sure. How did you deal with it for so long and if you don't mind me asking, how old were you were whenvit first started happening?

Offline ely0325

  • Registered member
  • *
  • Posts: 3
Re: Pityriasis Lichenoides Chronica
« Reply #418 on: Monday June 09, 2008, 02:43:10 PM »
I am sorry guys the font it came out a little too light lol

bunnie

  • Guest
Re: Pityriasis Lichenoides Chronica
« Reply #419 on: Monday June 09, 2008, 07:40:53 PM »
hi elyo325, welcome to skincell!
Quote
.I am very curious to know how it works and why does it last so long.
Elyo, if you read my posts on here, it will answer that question for you. You may ask " why is she answering questions on plc when she doesn't have it herself?" The reasons are twofold elyo ...
1) All of these type of conditions,including my own are either Autoimmune diseases or Atopic conditions.
Under each of those headings come  a myriad of skin diseases, each manifesting differently from one another, and also more severe or less severe in each individual. There are over 80 diseases listed under the heading of autoimmunity alone for eg.
Both headings of autoimmunity and atopic conditions are caused through mutated genes predisposing you to ever having this abnormal immune response, in the presence of a combination of particular factors in you. Each different condition that stems from either of these headings is simply the pathogenic result, of the abnormal immune response in each individual, which is caused through a combination of mutated genes and enviromental factors like viruses, radiation,  drugs etc. and/or hormones or other gland secretions in the body. Only people who have mutated genes carrying this predisposition, can ever get these conditions.
2)I am particulary interested in medical science, and the immune system.
This is what these autoimmune and atopic conditions do, flare and subside, or  disappearing completely for a time and then coming back years and years later sometimes, as mine did. This flaring and subsiding is not a specific symptom of the condition, but of autoimmunity or atopy. Some of these conditions are self limiting, which I understand pleva is one of them,(acute meaning of short duration) but PLC is not, (hence the word Chronica, of long duration). 
Hope this helps
regards Bunnie