The information coming in is very interesting. Any that is not repetitive will be placed below in the hope it will answer some of your questions.

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*Note: The colors of the site have been changed at the request of one of our writers. Comments and suggestions about the site are considered.

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Question: What is BEG? Who runs this site? Do you make any information on PLEVA available to those of us that have filled out your questionnaire?

Answer: BEG are the initials of the person who runs the PLEVA site and several other sites. I have been a health care provider for more than 30 years and was diagnosed with PLEVA several years ago. I realize the frustration of having this disease that has no known cause or cure and that is why I started the PLEVA site to attempt to find some answers. Its nature makes it one of the diseases seldom studied or researched, so I wanted to change that. I now have over 100 responses to the questionnaire and am working on getting a dermatologist involved in the research and correlation of the material. I am disabled so the process is slow. I will try to share as much information as possible. Note the site has an information section and answers that we have shared including this one and seven or so back pages of Q&A. If you have other questions, please let me know.

Question : Just wanted to share some info. First of all, last year (April to June) I came down with PLEVA for the first time. This web site was the best, if not only, place that helped me. I had only had the one outbreak and then went into remission and have been very lucky since. (I also changed my hectic lifestyle and moved to the South!) Today I noticed another lesion. I am a little scared that it is back but I appreciate all of your hard work and help. Also, do you think it is possible to get one or two lesions and prevent a breakout? Let me know.

Answer: I think you did some of the things that would help. Maybe your schedule has again become somewhat hectic and that is one of the areas you want to look at. Yes it is quite common to get only one or two lesions after the first outbreak and not get more. In fact, it seems to be quite normal to get one or two lesions with change of seasons, especially spring and fall.

Question : Hi - I have PLEVA and just found this web site. It's been 10 yrs now (I'm female, age 40)since I got this crazy disease & I was wondering what percentage of patients are still having lesions after this long. I remember my dermatoligist telling me she doubted it would last 2 yrs - max - but of course not much was known about the disease. Has any new ( and hopefully enlightening) info come about? Thanks!

Answer: I am afraid there is still no "cure". So little is known and I think the disease is underreported so I can't give you specific data. There may be more information about this disease on this site than available anywhere. I am working on getting this correlated and into broader circulation. There are multiple experimental treatments being tired and these are discussed by some of our respondents in the different Q&A pages (see bottom of this page). Sorry I don't have more news but please feel free to contact me if I can help.

Question: My 5 year old daughter was just diagnosed with PLEVA. We have been extremely concerned about her condition and after many visits to doctors we still had no answers. We were told bug bites, scabies,exema, virus, etc. We finally found a dermatologist who made the diagnosis of PLEVA. We were told that the rash may last for several more months to a couple of years. After reading many of the letters on your site Iwas paniced with the thought that she may have this forever! I would like more information about this condition in children. Like many of the others her condition began with an >illness. She had a virus, fever, and vomitting with a rash. We were told it would go away. Soon thereafter she came down with strep throat and the rash worsened. Then had bronchitis. The information your site provided about the immune system really hit home with me. This is definitly an area we will work on, however going to daycare she is constantly exposed to all sorts of things. It is a terrible feeling seeing your child covered with these crops of lesions and not being able to do much of anything to make them go away.

Answer: I've thought alot about how to answer your note. After more than 30 years in health care, I am still deeply touched by distress like yours. The problem for health care providers is that we do not have all the answers either. There is no known cure for this disease but know that it often disappears never to return. In fact, I would guess that the respondents to the site are more likely to have had more problems than the norm. These are the people who would be looking for answers whereas the people who have had it and it has disappeared, would not be likely to be looking for answers. The very small amount of information on PLEVA and children is also dealing with problematic cases which does not seem to fit your situation at the moment and, hopefully will not in the future. I would suggest that you find an "expert" in your area to talk to. A university Center often has providers that specialize more minutely. For example, several of our respondents have been referred to dermatologists at Duke for this problem. Hope this helps and please contact me if I can be of further help.

Question: Consider this an update to my MTX therapy. I followed all instructions regarding the use of this drug for 7 weeks, and I saw some decent results. I was in the midst of some pretty hard symptoms when I began the therapy. I received some relief, which equated into some of the newer lesions healing, some of the older lesions(4 months) dissipating. Unfortunately, I went off the drug for a golf vacation, which was going to include sun and alcohol. Bad move. After 2 weeks, my symptoms came back with a vengeance. I am sure some this was caused by the stress in my life at the time, but regardless, I returned to the treatment. I am returning in 2 weeks for more blood work, as the dermatologist I am dealing with is watching liver numbers pretty closely. I know I am on a low dose, but liver problems are probably worse than this stuff. Thanks for your website, and I am sorry I have not participated in the chat room.

Answer: Thank you for the update. In obstinate cases methotrexate may help as with the respondent above. Obviously it still does not appear to be a "cure".

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Question: I was just diagnosed by a dermatologist to have acute pleva. Am so very curious as to the statistics of this disease. I understand that it is rare, but how rare? I have had this for one solid month and am coming to terms with the idea that i will have this long term. I also am so surprised that the cause is unknown. If you could just tell me the statistics i would be very grateful. Thank you for supplying the information on the internet.

Answer: I haven't replied because I am not sure. I am trying to find out what the dermatologists think the statistics are. However, I think this site will change those statistics. We already have more than 100 respondents. That is more than I expected. Because this disease is supposed to be "rare" little or no research is being done. When I know what they consider the incidence I will let you know. I am still trying to contact Boston University to involve a dermatologist there in this study. I'll let you know via the page as soon as I know. (Could not mail this note because your email address read unknown)

Question: Do you know any therapy for PLEVA, you have information about this skins conditions Please, tell me something

Answer: qanswer.htm is the question and answer area of the PLEVA site. Many of the treatments, both standard and experimental, are discussed with some people's responses. Hope this helps.

Question: I stumbled accross your site while looking for some information on PLEVA. I am afflicted with this skin anomaly. I would love to know how to get to a chat area with other indivduals that follow this problem. I've had the affliction for several years, and continue to look for a hopeful solution. Is there a chat room dedicated to PLEVA, and if so, how do I tap into it? Thank you in advance for your help.

Answer: If you go to the Questions and Answer page, there is an area to pick up ICQ (a chat area) and we have a PLEVA site on Tuesdays from 9-10 assuming ICQ (no longer available but we are working on a chat site and it will be listed at top if we can arrange it)nis working properly(it often has problems. I sometimes can't get on till later., but I try to be there and am often there till eleven or later. I know of no other chat group for this disease or any other pages with the amount of information. If you have other questions, please let me know.

Question: I have had 2 treatments (galvanized electricity) and have found that the rash responds best on skin that is not close to the bone. As I am one of the unlucky 10% that now has it on my face I asked them to try it first on my face. My chin and cheeks have responded with healing but my forehead is slower. It is a very strange sensation when the currant is applied to my forehead as I can feel the deflection of the currant over the top of my head. We tried the currant on a test spot on my upper arm which was fairly new (less than 3 weeks old) and in 7 days it now appears as a pink spot with intact skin. I have mdconsult.com for a free 10 day trial so was reading up on PLEVA. There were 4 textbook references and 52 journal references. The journal articles sometimes got a little too technical for me. One discussed cutaneous T-cell physiology and how skin directed therapy with >photochemotherapy with PUVA can achieve remission and it also mentioned total skin electron beam radiotherapy and photodynamic therapy. I only know what PUVA is. Can you tell me what the other treatments are? The name of the article is: THE DYNAMIC INTERPLAY OF MALIGNANT AND BENIGN T CELLS IN CUTANEOUS T-CELL LYMPHOMA. It can be found on the mdconsult site. This article is mainly about Cutaneous T-cell lymphoma (CTCL) but it mentions a similarity of clonality to Mucha-Haberman's Disease. Could we benefit from some of these new treatments for CTCL? My favorite treatment is the beach and the sea which I shall start in two days.

Answer: Thank you for the update on galvanized electricity therapy. The beach and the sea sound like a wonderful therapy...of course in moderation and protecting the skin. There is a controversy about the possible link of PLEVA and CTCL. Some studies think they may be related and others see them as separate entities. Looking at these treatments, several factors seem to make these particular treatments unlikely for use in PLEVA. First, they are radiation and chemotherapy treatments used for malignant (like CTLC) type diseases. Second, It would appear they are quite toxic and cause enough side effects to be too big a gun for the existing problems. They have been trying methotrexate (a form of chemotherapy) for persistent PLEVA problems but, if it were me, I don't know if that would be my choice. Hope this answers your questions and I will check further if you want more specifics.

Question: Let me start off by saying how glad I am that I have found this website. I am a 27 yr old female. I work in a pediatrics office. I have had mucha habermann for 2 yrs this past week.(since June 97). I have been trying to figure out since the time it started just what happened preceding it, and the only thing I can come up with is that I started my hepatitis b vaccines in April of that year. After the second shot I started to feel lousy. Since I was diagnosed I have been on tetracycline, erythromycin, diprolene cream and I tried the light therepy. None have worked. I have constantly been broken out with lesions. Mostly on my legs and feet. Now more often on my torso and arms too. I am interested in talking with others that have this, however I work on Tuesday evenings, so I cannnot participate in the icq chat. but would like to know if others that have this have had problems with there immune systems being low. I myself seem to be sick quite often. I am giving you my email address so others may contact me. Thank you. melissa@bellsouth.net

Answer: I have posted your note. If you read some of the other info you will see that there seems to be a possibility that viruses may trigger the problem along with stress which can also reduce the strength of your immune system. Some suggestions for keepiong your immune system up to par are on the site.like echinacea, proper rest diet and fluids, relaxcation techniques, etc. My immune system was probably low at the time I got this but seems to be up to par now and I still get some lesions. It reduces slowly all the time however. Hope this helps and feel free to contact me if I can help. You may also want to get an ICQ number in case people decide to be in a chat list for PLEVA and they may be available at other times.

Question/Reply: Methrotrexate therapy results: First I would like to say I was and am very frustrated with trying to combat this disease. I am a project manager, with a hands on attitude-yet I have the ugliest hands in the company.

Second, I completed 2 weeks of mtx. The dosage was small (I don't remember the milligrams of the pills) from what my dermatologist explained. I took 2 very small tasteless tablets every 12 hours for 36 hours 1 per week. I am probably bigger than average, 6ft 230lbs, so the side affects of this drug have not been as bad as I had imagined. I could feel a little burning in my gut, and maybe some heartburn at times during the day, but nausea or abdominal cramping were not one of the by products of this therapy. Actually, I had more stomach problems taking E-mycin for 3 months. Talk about the squirts.

Third, I think the initial therapy helped. I am not saying suddenly I am cured, in fact I am continueing to apply topicals, take vitamin supplements, and attempting to reduce my stress levels. What I have noticed for myself was that the active lesions, or those just beginning to cluster and redden, suddenly stopped and healed. Any lesions that have been on me for some time, are slowly improving-very slowly. But the way I think about it is I have seen some improvement in lesions that I have had for 6 months.

Lastly, I don't like taking this drug. I am afraid of the long term damage this may or may not do to me. But as most of your respondents will agree, I am sick of this crap, and I want it gone. I would not consider myself a vain individual, but, well you know where I am going with this. I will begin my 4th/5th session this next week-I promise I will let you know the results. Don't hesitate to ask me anything about this therapy, I think this site is great--and I think you do a good job of providing support for others with this affliction.

Answer: Thank you so much for your response. If any others have information for us, please let me know.

For more information, see pages below:

pleva information from medical books

.Previous Questions and Answers:

Q&A Eight

Q&A Seven

Q&A Six

Q&A Five

Q&A Four

Q&A Three

Q&A Two

Q&A One

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