PLEVA, Mucha-Habberman's disease
caroline

Edmond, OK

#142 Apr 7, 2009
I came down with Pleva over a yr ago. I thought it was due to several conditions that had been going on. Serious infection, several surgeries, and then a daughters wedding, all within a yr and half. the Pleva developed in April of last yr right before the June wedding. I too was covered from neck to ankle. I have had several medications, including the methrotexate, now I'm taking steroid shots. Nothing helps really. I soake in lukewarm water with about 3 cups of Epsom Salts, I take Cyclosporine 2x a day. I still have it...I am now scarred - I can't shave my legs, I itch, ---I am about ready to join the circus as the Lizard lady....
Floyd

El Cajon, CA

#143 Apr 12, 2009
I get treatments with UVA radiation at the military hospital - basically a tanning booth that uses UVA light only. Natural sun and regular tanning booths should work as well. You've got to balance the treatment against skin cancer though. I am "breakout" free for over a year now.
Sue H

Salisbury, UK

#144 Apr 13, 2009
I was diagmosed by biopsy in 1996. I thought I had chicken pox again, but it lasted so long. After the biopsy, I tried natural products, but nothing helped until I used aloe vera. Slowly I recovered, but now its back again! Stress does it, and also last time it followed shingles, so I think the body just can't cope.
I also have allergies, we are an atopic family, with ashma, excema, crohns etc. I have none of these just pleva, and its awful This time I have it from the waist up. Back, chest, neck, face, head and even my eyes are affected. If I rub my eyes they swell, so I'm on constant antihistamines. I've given up wheat, which I never tolerated well either. My doctor told me all they know is that it could be a yeast problem, but who knows.
Hugs to you all, I know how you feel!
Mollie

Goodlettsville, TN

#145 Apr 22, 2009
I was diagnosed in October 2008. I was on several meds and steroids and finally I have been fine for the last several months. I do have scars on my legs, arms (especially around elbows and wrists) that almost look like small burns. I had one lesion pop up several weeks ago but none other since. It is a very strange disease and apparently affects people differently. My doctor (derm) did a lot of reseach since I was her first patient with this disease and whatever she gave me worked! I do sit in the sun every now and then but I really think mine cleared up with the medicine (doxycyclone) which I took on a consistent basis for about 6 months.

Believe me, I have been through the worst of it, bleeding, open sores, not feeling good, self conscious, scarring, etc but hang in there and hopefully someone, somewhere will find the right meds for it!
Mom

Hollywood, FL

#146 Apr 23, 2009
My son (10 years old) has just been told that he may have this. I am so sad. The rash is so very bad. He is upset. we go for the photo. ther. tomorrow AM. I hope that this will work. I hope that it goes away and never comes back.
:-(
Please keep writing in and let me know what will help him to feel better.:-(

Mom
Pammy

Florence, KY

#147 Apr 23, 2009
Hello everyone. I ran across this message board while researching PLEVA. We just found out today that my 19 month old son has this. We have no had the biopsy yet, given his age, it would be rather hard to get that done, so we opted to try the creams and antibiotics for 4 weeks and we are crossing our fingers it helps. He was misdiagnosed two and a hlf months ago by his pediatrician as having Fifths Disease. Well, after that long of a the rash only spreading to more and more of his body, now nearly 90% is covered, we took him for a 2nd opinion. Unfortunatly, the doctor was at an acute care office and could not diagnose him or prescribe any medications because he has had it for so long, but he did tell me that he thought it was PLEVA and to get him to a dermatologist A.S.A.P. So, now our journey begins. I hope it is a short one. Any helpful info will be greatly appreciated.
Tara

Bronx, NY

#148 Apr 29, 2009
[I was diagnosed with PLEVA in Oct 2007. You really should have a biopsy to get the correct dianosis. My scalp and legs burned occasionally. And i was COVERED everywhere except my face and buttocks with the spots. Thankfully i wasn't itchy with them. It took a good 8 months for them to go. I too read about PLEVA on the internet and i truly nearly had a nervous breakdown. I think everybody is different with this disease and the more negative things i read, the worse my rash and my state of mind became. I have had the occasional tiny breakout that leaves within a couple of days. I dont even think about it now. I live in NY and i went to my dermatologist yesterday and he thinks i'm done with it. I think if your immune system is weak you are more likely to get this. I try to take zinc, vit c, omega fish oils and a few other things to help build me up. And stress is not good. My doctor told me to forget about it as best i could, when i first had it. And i think that is the best way to fight it. Ignore it. There is light at the end of the tunnel. And if i get it again, i will not let it overtake me again as it did before. I actually feel like a stronger person since i have had it. The best of luck to all of you.

Tara
Long Island, NY
Sue H

Edenbridge, UK

#149 Apr 30, 2009
I have to agree with Tara, so many things she said made sense to me. As I stated before, I was diagnosed in early 1996. It was a condition I had never heard of and there was so little information forthcoming. I was sent back and forth for months and only offered drugs, which were ineffective or ultraviolet treatment. Secondary infections were rife, I was a mess.

I used fresh aloe on my lesions, four times a day, it stopped the infections and I started to heal. The odd new one I zapped with tea tree.

My first bout followed shingles and I believe stress makes it worse. I had a rough year last year and its back. I have gone back to basics, no processed foods, and just generally cutting back where I can on anything stressful. Everything about spring irritates the condition, with tree, particularly birch pollen, in the air. My eyes, face and scalp have been affected badly this time, and the itching is unbearable at times. I feel tired and unwell. Sometimes I seem to be improving but a low tolerance to many foods adds to the overload.

Its a strange disease and hard to shake once its got a hold again. All I'd say is reduce stress where you can, and treat the whole body not just the spots. Its good to be able to talk. Take care.

Sue
paul e hampstead nh

New Boston, NH

#150 May 2, 2009
Genene Australia wrote:
Diagnosed last week with PLEVA.I am in my early 50's and have had sensitive skin all my life. Have been searching for PLEVA info since. This site is the best I have come across. My face and scalp is now the only area not covered in this horrid rash. All at different stages on the body. I was lucky, had seen my doctor only twice before biopsy's were done. Now on Erythomycin and using Calamine lotion for the itch{its the only thing in the last 3 months that seems to work, have tried many creams without this level of success} Time will tell if the medication works{don't hold out much hope as I have had a new outbreak since starting the Erythomycin}. Will try limited sunshine as my next step.
Thank-you all for sharing your experience's and hopefully this site will

help others as it has me. Regards to all Genene.
I was diagnosed with pleva sept. 08. I was wondering if you had a
Tetnus Shot before you were diagnosed with Pleva... I am trying to find out how I got this at 59 yrs old ....
paul e hampstead nh

New Boston, NH

#151 May 3, 2009
Pam wrote:
Came down with PLEVA over 5 years ago. At the worst I was covered with open sores and ate ibuprofin to deal with the itch (other itch medication put me to sleep). Although I went to derms, wasn't diagnosed until a little over a year ago. Now it has such a hold on my system I have taken 3 Ethrymycin a day for over a year and use steroid ointment. Had a small breakout this winter and am looking forward to getting some natural sun which seems to be the most help. You are right! It sucks!
Pam
could you tell me if you had a Tetnus Shot at some time before you had the
outbreak? I had a Tetnus Shot and 7 days later broke out all over...The Derm.
say it's Pleva...but i'm skeptical about the shot I had... there was no reason for the shot, just that my dr. said I needed one...
nathan

Quezon, Philippines

#152 May 3, 2009
gagogago
yum

Quezon, Philippines

#153 May 3, 2009
help!!!!!!!!!!
Dave

Newport News, VA

#154 May 12, 2009
paul e hampstead nh wrote:
<quoted text>
I was diagnosed with pleva sept. 08. I was wondering if you had a
Tetnus Shot before you were diagnosed with Pleva... I am trying to find out how I got this at 59 yrs old ....
Paul, I got this Pleva at 54 now 56. I have gone to 3 derms, 1 GP, My current Internest. He sent me to an Hemetologist/oncologyst. All tests are ok. However, My EVB ebstien barr was high. Doc said, I was exposed sometime. I said, I didn't have mono. Hemo said he will probably never see another case of Pleva because its so rare. I am going to get an appointment with Dr. Gaspari at U of Maryland. He is suppose to be a world wide derm. Something has got to be done. Best to all.
Dave

Newport News, VA

#155 May 12, 2009
By the way. Does anyone use doxycycline? Has it worked? Anyone else heard of anything that helps?
If so, give me your e-mail or phone. We have to find something for this awful condition. Thanks in advance.
paul e hampstead nh

Swanzey, NH

#156 May 12, 2009
Cheryl wrote:
<quoted text>
Thanks Linda
I have an appointment with my general practitioner on Monday to get my daughter referred to a specialist who deals with PLEVA. Watch this space
Cheryl, could you please let me know who this
specialist is and where he or she is located... Thank you so much
for your info... Paul ... hampstead,nh. My e-mail is [email protected]
Jess

Chatham, UK

#157 May 12, 2009
I am taking my daughter(6) to my GP on Friday. Her doctor said her spots are eczema but after researching about Pleva I feel this is what she may have. I read somewhere that there be a link between Pleva and Parvovirus(fifth disease) which my daughter had in January
paul e hampstead nh

Swanzey, NH

#158 May 13, 2009
Pam wrote:
Wondering how everyone else thinks they contracted PLEVA. Had a friend who got a fungus infection from a tanning bed. Thought this might be a possibility of how I got PLEVA. Now I only use a stand up unit to tan. Lived in a mobile home court that had issues with our drinking water that came from ponds, think this may be another source. Have read that the cause may be a micro organism and PLEVA seems to be most common in those with "allergic" systems. My PLEVA began only months after being diagnosed with indoor and outdoor allergies and food sensitivities. Anyone else have an allergic system? Feel that being on ethromycin shortens the life cycle of each outbreak, but I still get PLEVA.
Pam : I think my Pleva came from a Tetnus Shot.. I am
58 yrs old and just diagnosed with Pleva... but 7 days after the shot is when I woke up with sores all over... There was no reason for the shot expcept my Doc. said I needed one... Did you have a Tetnus Shot..
thanks , Paul
Bea

UK

#159 May 14, 2009
Bromelain (pineapple extract) has helped my PLEVA and PLC. It took around 5months. I followed the dosage recommended in this study :
http://cat.inist.fr/...
Ann Marie

Prescot, UK

#160 May 15, 2009
Hi All

Lucy (my daughter) has pleva (see previous posts) but has now showing signs of asthma - anyone else have both?? There is absolutely no history of asthma in either family. Any feedback, either negative or positive will be appreciated.
Mollie

Redmond, WA

#161 May 16, 2009
Dave wrote:
By the way. Does anyone use doxycycline? Has it worked? Anyone else heard of anything that helps?
If so, give me your e-mail or phone. We have to find something for this awful condition. Thanks in advance.
Dave, I took Doxycycline for 6 months and I have not had but one or two lesions since. I do sit in the sun every now and then so I don't know if it is the meds or sun or both that have cleared me up. I had a severe breakout around November 2008, started taking the Doxcycline for 6 months and have cleared up and stayed symptom free since.

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