Q&A Five

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Question: I am 41 years of age, male and other than having plc am in fairly good health. I have recently had a fairly thourough medical and have no serious problems. I developed this skin condition about 5 months ago and have had it diagnosed by a consultant dermatolist, Harley Street, London and also of St Marys hospital Paddington, London. Please can you let me know what the latest developments are for this condition and any treatments that might be available, even if they are in the experimental stages. My own GP is at Antrim Health Centre, ANTRIM Northern Ireland and he would also appreciate any information that you can let him have, either by e-mail through me or directly by post. Should you require information from me I would be more than willing to partake in any trials you may wish to carry out.

Answer: An attempt is being made to keep this site up to date with the newest and best information about PLEVA and PLC. No information about any research or trials is available at this time. I am not a dermatologist but am going to try to contact one with the information I am collecting and see if we can design something and publish this information. At the moment I think we are the most knowledgeable about this disease with what you and others are sharing.

Question: Has severe migraines and peri-ocular swelling ever been associated with this disease (PLEVA)?

Answer: As stated in the descriptive area and in other answers, there are no known systemic symptoms. That said, many people who have written to the site have had other symptoms that have appeared during the disease and may be related though that cannot be said for sure. Since the note from one writer said his dermatologist he said it was herpes seven, I had that test and it is positive for herpes seven. Since herpes type viruses can cause numerous symptoms, and if many of the diagnosed PLEVA patients turn out positive, dermatologists may have to rethink the no systemic symptoms statement. That is another reason for this site. The information collected may teach us more about this disease.

Question : I am a 38 year old female. I started working in a residential facility for the mentally ill in September. The place is run down and approaching closing. The bathrooms were always filty with feces and urine around. I had to use them, but I tried to avoid the filth. I also had a mentally ill patient in the first week of September grab me by the arm (which had a scratch) after having his hand down his pants. I was told later he may have herpes. Well, I began to brake out the end of September. I have had 3 biopsies. I was told I have PLEVA. I am broke out in chickenpox like lesions everywhere now, except my face, privates, and hair. I am losing more hair then usual though. I am frustrated by the lack of help. I have seen 8 doctors! I am on cortisone ointment and Emycin. I was told to go to a tanning booth, which seems to help. This has been going on and continues without remission for over 3 months. I am in Sioux City, Iowa. Where can I get help? Please help me! Thank !
you.

Answer: You are receiving very typical treatment. There are no known experts on this disease (in fact most of the work around is being done in Germany) and there are no studies or research going on as far as I know at this time except this site. It may be worth asking your dermatologist about one of the herpetic type meds (zovirax, famvir, vancyclovir, etc) as a possible treatment. Realize it is not a cure and seems to work best in an initial infection of an herpetic type infection. At any point it may shorten or lessen the severity if this is herpes seven. There is a blood test for herpes seven and knowing if this is positive in all victims of PLEVA or chronic PLEV may be worth finding out as this would mean the acyclovir family may help.

Question: I am a 39 year old female who was diagnosed with Pleva mid-summer. I first got the rash in the spring. It started with a few then progressed. I was first diagnosed as having scabies and was given a treatment that burned my skin badly. I was then sent to a specialist after months of suffering and feeling dirty, because I couldn't stand the thought of having had scabies. Late summer the specialist prescribed Erythromycin and that seemed to clear it up after two months. A month and a half ago I got a grouping, it was a little itchy not to bad. Again I have been prescribed Erythromycin which does not seem to be helping in any way. My question after all of this is: I also have a thyroid problem which I take medication for. When I got my patch back, I also had my thyroid medication increased. At this time I noticed that my patch was only that, a patch, one patch, and the itching went away by the second day of taking an increased dosage of my thyroid medication. Is this a coincidence or just a fluke? Does PLEVA-Pityriasis Lichenoides et varioliformis acuta have any connection with thyroids? Thanks for any info you have, and by the way thanks for having this site. It's the only place that gives us some answers.

Answer: There is no information that would specifically indicate that the medication or the thyroid problem would trigger a cropping. That said, the stress/changes to the body of a new medication or a disease entity like thyroid problems may cause a cropping to occur or become better. There seems to be evidence that stress can affect the disease especially since it also seems to affect the immune system. This can be either positive or negative depending on the situation. Since the medication may have decreased an imbalance in the body, it would seem logical that the lesions might become better.

Hope this helps to answer your question as much as is possible. If you have any other questions, please feel free to contact me.

Question:Thank you for your efforts toward this disease. My 5-year-old was diagnosed with PLEVA via a biopsy in late October. He began showing signs of improvement by about mid November and we were becoming quite optimistic, but he broke out all over again over Thanksgiving weekend. Why is there so little info about this disease? It's hard to believe that it will go away at some point. Can you offer any words of encouragement or maybe accounts by people who have dealt with PLEVA before? It's hard to find anyone who has even heard of it!

Answer: I believe it is what they call an orphan disease in that it is not life threatening, there is no specific cure and not enough people are affected by it to cause it to be prominent. This means it is not worthy enough of study to develop grant money, research money, etc. This means that the largest batch of information may be coming through this site. I am going to try and correlate all this information and get it published and printed. Maybe we all can change what is happening with this disease. As far as accounts of what is happening for people with this disease, the chat room may rpovide some of this. I will save the chats and put them on a page setup for people to read. I will also keep email addresses of anyone willing to discuss the subject with each other. As I have said in some other answers, my cousin has had this disease for over 30 years and has always had a hard time with new providers realizing what he has, knowing anything about the disease, or how to treat it. Often the response of providers has been that it is being done by the person infected. Hoefully this will change and maybe it will be because we are all trying to do something about it.

Question: I sent this in about a month ago but never received a response, so I wanted to try again. I was diagnosed with Mucha-Habermann's Diease over 20 years ago and still have symptoms (although slight) to this day. One thing I have noticed is that my immune system is low and I get sick often. About four years ago I had to have surgery to have a benign tumor in one of the lymphnodes in my neck excised. I was told that the tumor occured because I get sick so often and this results in scar tissue in my lymphnodes. I regularly have swollen glands and will probably need to have more of my lymphnodes removed. My question to you is whether or not you have ever heard of this before in patients that you have spoken with. I feel that it could be related to my chronic disease state and was wondering what your opinion is. Thanks for providing the insight into this disease. I have been dealing with it for a long time and am here to report that it does get significantly better! over time.

Answer: As has been noted before, there are supposed to be no systemic symptoms. There is also so little known about the disease that this may be wrong. Herpes seven has been mentioned as a possible cause and any herpetic type disease can cause flu like symptoms which may include swollen glands. One of the things you may want to think about is ways to improve your immune system. Good diet, enough fluids to keep your system flushed, at least 7.5 to 9 hours sleep at night, herbals like echinacea and ginseng (Siberian seems to have a more stable response and is less expensive) used on an intermittent basis are said to help, moderate exercise (not when you are ill), etc.

Question: I was diagnosed with Mucha-habermann's disease recetnly, and I have been so itchy I can't stand it. Is itchyness a common symptom? Because I have not found any literature on the disease mention itchiness.

Answer: Itchiness in any rash is not unusual, particularly as the elsions scab over and begin to heal. An antihistimine like benedryl or chlortrimeton may help. Remember they cause sleepiness and dry you out so be aware and compensate for those side effects. Chamomile is a natural antihistamine and is in many teas or can be bought as the flowers to make your own tea. These are available in regular grocery stores, health food stores, etc. It is also available at Glory of the Garden on the internet. Also Glory has a chamomile tea and a relaxing tea that contains both chamomile and several other herbs that may help

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