Q&A Four

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Question: I am 28 yrs old and have had pleva since I was about 6. I break out in intense rashes that generally covers my body. This would generally happen every 2 years and mostly in the spring. My lesions would last for 1-2 weeks then go away by covering them with benadryl lotion and taking double doses of benadryl medicine. but I also noticed that the past few eruptions occured mostly on sun exposed areas of my body in the early spring. so I started going to the tanning bed in the late winter time and tanning myself so that the early spring sun won't have much affect on my skin. This seems to have worked because I haven't broke out in 4-5 years. Is there any validity to the self treatments that I have been doing?

Answer: PUVA, ultraviolet light treatments, are used to help this disease, so tanning or mild sun exposure should help the lesions. I am not sure that the problem in the spring is related to sun exposure unless you are getting too much too fast. One of the things about PLEVA is that the lesions seem to appear in the SPring and Fall at change of season so some of these occurances may be coincidence. Also remember that sun exposure over time can be a problem for the skin. A second beware is that using both benedryl lotion and benedryl by mouth can cause a rash in some people. Those considerations in mind, if it works for you, then use what you need to. Others don't necessarily have better ideas.

Question: I have a 5 year old male child who was diagnosed with Pityriasis Lincheniode. The lesions appeared in August of 1998 and started on his ear, forehead, chest, and knees. The first biopsy did not show anything after 30 and 60 days and prescribed ointments as well as antibiotic did not help the first three to four months. The scars that remain on my son are a constant reminder that this "disease" may continue indefinitely. After repeated outbreaks, I took my son to a different dermatologist who also performed a biopsy in November which finally came up with PL. Tonight, as I write to you, I find myself frustrated as the disease appeared to be leaving and there were no new outbreaks for about two weeks. Last night my son had a fever and complained of leg cramps and this afternoon I find his trunk, legs, and arms looking like a bad heat rash. This is probably the 3rd or 4th different form of lesion that has come out and they all tend to go through various stages. My son also suffers from herpes type sores in his mouth periodically since this disease began. I am writing to you because I have done the "searches" and find that I don't know what really differentiates PL Chronica from PLEVA. Can you help me to understand this distinction? Yes, we are off to the doctor tomorrow to find out other options (UV Light had been mentioned early on). Thank you for any information that you may offer to help me to help my 5 year old deal with this disease. Thank you.

Answer: PLEVA with the A is acuta which means an initial acute form of the disease. Chronica is the subsequent croppings or chronic stage. I have found nothing that says when that line is drawn. The V in PLEVA is Varioliformis meaning many forms so it is not surprising that it appears as different lesions. One of our responders mentioned that this may be herpes 7 according to one of the dermatologists he saw. I have found nothing to prove that this is true though I am still trying to research it. If it is true, zovirax or one of its family which suppress herpes diseases, may help. I have no other ideas right now. The treatments they have been using are standard. If there is anything else I can help with please let me know.

Question: Sorry it took me so long to respond, but I have been very busy with school. My doctor couldn't remember exactly when or where the article about herpes and pleva was published. He said he thought it was in Archives of Dermatology or Journal of the American Academy of Dermatology, in the past year or so. I go to a university with one of the top medical schools in the country, and was able to search medline through my school's web page. I searched for hours but couldn't find the article he referred to. I'll ask him again next time I see him, but he isn't the most helpful listening doctor. He is an expert and an extremely respected dermatologist, but he is very straight forward and no nonsense, and didn't seem like he really cared if I found the article last time I asked him. Sorry I don't have any good news of proof. You can search in those journals if you want, but I am fairly sure what we are looking for isn't there. Hopefully my doctor will be more helpful next time I see him. ps. right now I'm on doxycycline and betamethasone ointment, and my pleva is basically under control, although I do have some spots.

Answer: Thank you for continuing your search and I will too.

Question: I have been diagnosed with mucha-haberman disease. This is my first episode. I believe that my observations could add to the dialog. If anyone is interested, please contact me at skmangum@yahoo.com. I am also interested in knowing anything about this thing. Thanks.

Answer: Write it up and I will post it. I have a site for chatting almost finished and will post it on the Q&A page soon. Thanks for your note.

Question: Thank you for posting a response to my 19 year old son's diagnosed PLEVA. I find your site has the most info although the disease itself is horrifying. My son is now into his ninth week and only the past week we have noticed that there has been no new scabs. There is however redness and discoloration and scars from his face down to his toes. I have him taking Vitamin E and C along with his Tetracycline. The doctors tell us it is too early to start the PUVA treatments. We don't understand why. The pain and itch associated with the severe scabbing has calmed down. The muscle aches and fatigue seem to have cleared up but the skin condition is just a heartbreak to look at. Thank you for keeping us informed. I don't know how much longer the healing will take. I am looking into alternative healing and herbalists. We have many eastern medcine doctors in my area. Have you heard of any success with acupuncture, herbs or other eastern methods? Thanks again.

Answer: I started this site because no one seemed to have answers for me. I started using herbs myself and they seemed to help. That is when Glory of the Garden started with the herbs, the books, and now more. I don't know about the other forms of "complementary medicine" as they are called today but, if they have no negative side effects, they may be worth a try. I certainly feel traditional medicine should still be part of health care.

Question: My ten year old son's best friend was just diagnosed with the disease as he has been breaking out for 5 weeks. They determined this after doing many blood tests and a biopsy. Two days ago my son came to me about a rash on one cheek of his buttocks--about 10-12 spots varying in size--some were faint, while others looked like chicken pox. I put hydrocortisone cream on the rash, thinking maybe he had sat on some ants at soccer practice. He informed me that his friend's rash was not contagious. Now I am really wondering about it? If he continues to break out, I am going to call my pediatrician--it's the same as his friends. They went to one dermatologist who diagnosed it. Do you think that this could possibly be the same thing or just a strange coincidence? Does it spread within families?

Answer: It has not proved to be contagious within families and there is only one listing in the literature showing two cases in one family. However, there is little information about the disease around at all. Documentation is poor. Only unusual cases are discussed. Dermatologists do not see it as a disease to collect information about or research. I am trying to work on this. If it is an herpetic type disease, keeping hands clean after contact with lesions and avoiding direct contact of lesions with broken skin should be enough to help prevent the problem. From the description I think this may be some other problem and coincidental.

Question: I was interested in the fact that this virus may be associated with herpes. I have been treated for herpes in the past by using Zovirax so I decided to take one pill a day and see if I had any improvement. It may only be coincidence but, as of today I only have about 5 marks on my body (from 50). I have had this disease for about two years and I have tried just about everything. This is the first time I have seen any real improvement. I haven't seen a doctor lately because I was so frustrated with their progress. I am also a little different from most of the cases I have been reading about, I have a severe sensitivity to sun. My breakout started when I went in a very high intensity tanning bed and since then I have been unable to go in the sun without a very high sun block. I'm not sure where to go from here but I thought I would pass along the information. Thanks for the site, it has given me comfort in the fact that there are other people out there with this condition. Please feel free to e-mail me back if you want to ask me any other questions.

Answer: If this is actually Herpes type 7, it is possible zovirax and the other herpetic medications could work. It should be noted that these medications work well for most people in the initial outbreak but may be less effective with later outbreaks and that they are not a cure. Their action is to suppress the virus so the skin lesions are no longer present. Of note also is that some people have one outbreak of PLEVA and never have another. The fact that a possible cause has been found and that there is a tremendous amount of research going on related to viruses in general, speaks well for the possibility of a cure in the future for those of us with more than one outbreak or outbreaks that last longer than expected.

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