Pleva? Is there ever going to be a cu...

Pleva? Is there ever going to be a cure????

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Heather

Hibbing, MN

#1 May 14, 2009
I have had pleva for about 4 years now. They started on my belly, moved up to my arms and then to my legs. They start out as little red spots then progress to be scabby and then scar. My legs however just turned into what looks like bruises. Thank god they don't itch. I am very selfconcious about wearing shorts and short sleeve shirts. I have seen 3 different derms and all took 2-3 biopsy's. All results came back with pleva but no known cure. With technology these days you would think someone would have come up with something by now. If anyone finds anything that helps, even just alittle, please lets me know.
Kei

Gonzales, LA

#2 May 25, 2009
Heather wrote:
I have had pleva for about 4 years now. They started on my belly, moved up to my arms and then to my legs. They start out as little red spots then progress to be scabby and then scar. My legs however just turned into what looks like bruises. Thank god they don't itch. I am very selfconcious about wearing shorts and short sleeve shirts. I have seen 3 different derms and all took 2-3 biopsy's. All results came back with pleva but no known cure. With technology these days you would think someone would have come up with something by now. If anyone finds anything that helps, even just alittle, please lets me know.
Hi Heather,
I Feel Your Pain. I was diagnosed with PLEVA 2 months ago and all doctors can tell me are to be patient. My second outbreak was def the worse! They were more like bruises than bumps and they took forever to heal. I could not walk or get out of my bed, it was so painful! Although Ive only had it for 2 months, the methotrexate seems to work better than the doxycylcine. Sorry I cant tell you much more, but I am new to this and I am trying to deal with it the best way that I can. My doctors said that this is one of the worse cases they have seen, it completly covered my face also! They said that the marks will eventually fade, but do they really fade away?
Ruby

Fredericton, Canada

#3 May 18, 2010
I have pleva for13 months and it is the worst thing that has happened to me in my life. I also have had these white chauk like spots just under the top layer of my skin and they itch until I scratch them out then it stops but it comes back bigger and I have had these for 25 years, the Drs. would burn them off until I got this Pleva now they don't know what to do.has anyone with Pleva had these white spots before they had the Pleva.How can this be happening in the 21st cen.
betty

New Orleans, LA

#4 May 19, 2010
does anyone know how many cases have been diagnosed with this horrible skin condition
betty

New Orleans, LA

#5 May 19, 2010
i am taking rock salt baths.it seems to help the skin to peel on the spots that are left over.
betty

New Orleans, LA

#6 May 19, 2010
if it is of unknown origin is it in our diet possibly
Richard

Plymouth, UK

#7 Jun 28, 2010
Hi Guys, I have the severe form of PLEVA which is the Ulceronecrotic Mucha Haberman disease, which very nearly killed me. Acute forms of Pleva are extremely rare, and the cause unknown, but it is suspected that it could be malformed 'T' cells which the immune system sees as an enemy and the body then sets about attacking itself. My treatment has been 40mg daily of Prednisolone and this has been very successful for me. Be aware that the steroid medications can cause havoc with your emotions and can leave you feeling stressed,anxious, panicky and at your wits end. If you can recognise this and put it down to your steroids then at least you know it is a side effect and this too can be treated. I am now (after 18 months) down to 3mg daily, although the side effects of coming off the drug are proving severe for me. I am reducing at 0.5mg every 2 months now, but even a small drop such as this gives me terrific head aches and induces vomiting. On a plus side, my long suffering wife tells me my behaviour is getting back to the person she used to know and that is a great relief. I think we have to accept that we will never be free of the disease, but it can subside and not resurface for years, sometimes never. Sunshine has been great for me, and a relatively healthy life style has helped, but believe me, I'm a stone over weight and no Brad Pitt! For you ladies who understandably worry about the scars, they DO fade after a while, but I find they do not 'Sun Tan', but either stay white or conversely go very dark. Every time I get a spot I get a sense of dread, but that's life I guess. If I can give any advice it is this. Find a Dermatologist who actually KNOWS about Pleva. Don't put up with second rate treatment. DO seek other medical advice if you are not happy with your Doctor. There is lots of work going on into auto immune diseases and how to combat them. Anti rejection drugs for transplant purposes will have benefits for Pleva sufferers, as will cancer research treatments. Don't think that just because Pleva research appears to be non existent that the situation is hopeless. Pleava is just one of a number of this type of disease that comes under a big umbrella of moe commonly known diseases that are being researched. Hang in there people, we really are a rare breed you know!
Jason Hoium

Saskatoon, Canada

#8 Aug 11, 2010
Heather wrote:
I have had pleva for about 4 years now. They started on my belly, moved up to my arms and then to my legs. They start out as little red spots then progress to be scabby and then scar. My legs however just turned into what looks like bruises. Thank god they don't itch. I am very selfconcious about wearing shorts and short sleeve shirts. I have seen 3 different derms and all took 2-3 biopsy's. All results came back with pleva but no known cure. With technology these days you would think someone would have come up with something by now. If anyone finds anything that helps, even just alittle, please lets me know.
I happened to find your post and I can completely identify with you. I too had PLEVA and after several exams and biopsy, it was finally discovered. No one seemed to know what to do for me and although the condition itself is fairly inert (no itching, pain, etc.) it does have an effect on your self-esteem. I was treated with Tetracycline for several months to no avail. I was also given some shampoo type solution to bathe in which was supposed to help. Needless to say that did not work either. I was younger at the time (probably around 14). I had begun to feel as though there was no cure or no solution and I would have to live my life with these spots all over me! Thankfully I met with a dermatologist that had the solution. I was scheduled in for treatments a couple times each week where I would have a short bath in a special solution that helped accelerate the treatment followed by UV light exposure (tanning bed). This was all done in the hospital and believe it or not, after several weeks, the spots disappeared.

Hopefully this is helpful to you because I know how I felt and if I can make a difference for you that would be great. It is now ten years later and I have not had any recurrence of this condition. Best of luck.
Richard

UK

#9 Aug 12, 2010
Thanks Jason, I think the answer to a lot of people's concerns lie in the fact that PLEVA is very rare, has several different layers to it, and that Doctors who rarely see PLEVA have difficulty in diagnosing it.The fact that hardly anyone has ever heard of the disease (until they've got it) makes diagnosis even harder, and I dread to think how many people may have come to a premature end for this reason.(Another 2-3 days and I would not have been here to tell the tale). It is VITALLY important that people get to see a specialist Dermatologist instead of a GP.(General Practitioner) or local doctor as you may call them. My symptoms were severe. Absolutely crushing pain in my arms and legs, very large pus/blood filled blisters everywhere,(My elbows, hands, legs and buttocks were covered in them) and my lungs started filling with fluid which made my breathing hard and I felt like I was suffocating.
To look at me now you would never know I even had the disease. Your comments about being free of it for 10 years are extremely uplifting, and I pray this may be the case for me too! I have about 10 months of Predisolone left, and hopefully, fingers crossed, I may be free of PLEVA FUMHD for as long as you! Thanks for your reply, it has cheered me greatly!
Tammy

Copiague, NY

#10 Sep 2, 2010
I have been diagnosed with PLEVA over 10 years ago and I can't wait until they can find something that can actually help us! I have not worn anything but pants since I was 18 years old and have had low self-esteem since then. Everyone looked, stared, and who had to nerve to ask will push up their nose and ask "what's that". People scorned me and always thought that I had something wrong that they could catch. I have black marks all over my body and I can not stand to look at it in the mirror. I am presently dealing with a breakout that started 3 months ago and due to the fact that it is summer it itches more than normal. I am hoping to start a new treatment (methotrexate shots) that is currently used for psoriasis. A study conducted in Europe has proven that it was successful in the treatment of Pleva. Oh how I am hoping it really does! For everyone else who is living with Pleva, I will be praying for you because it is not easy to live with.
Richard

Wolverhampton, UK

#11 Sep 3, 2010
Tammy wrote:
I have been diagnosed with PLEVA over 10 years ago and I can't wait until they can find something that can actually help us! I have not worn anything but pants since I was 18 years old and have had low self-esteem since then. Everyone looked, stared, and who had to nerve to ask will push up their nose and ask "what's that". People scorned me and always thought that I had something wrong that they could catch. I have black marks all over my body and I can not stand to look at it in the mirror. I am presently dealing with a breakout that started 3 months ago and due to the fact that it is summer it itches more than normal. I am hoping to start a new treatment (methotrexate shots) that is currently used for psoriasis. A study conducted in Europe has proven that it was successful in the treatment of Pleva. Oh how I am hoping it really does! For everyone else who is living with Pleva, I will be praying for you because it is not easy to live with.
Hi Tammy,

I feel so sorry for you ladies, to whom this terrible disease punches great holes in the confidence and self esteem.Thankfully, My days of 'lady chasing' are long over, and my wonderful wife Sheila has stuck with me through thick and thin. It surprises me that even though Pleva is quite rare (and the variant I have is extremely rare), that we never get asked to take part in studies or trials. I will pray for you too Tammy, because under the debilitation and pain of this disease you are still a human being, with hopes and aspirations and dreams like the rest of us. It's very easy for people to say 'it doesn't matter what you look like it's your personality that counts.' That's very true, but it doesn't protect you from the sledge hammer blow that this thing has cursed you and seemingly no one else. I get times when I feel like a werewolf, dreading the oncoming of a full moon. All we can do for each other is stay in touch and keep each other supported and informed of any developments. God bless and keep you Tammy, keep on the forum for support and remember; We luvya baby!!!
Tonya

Owensboro, KY

#12 Sep 5, 2010
hello all, my name is Tonya and I have had pleva for a little over a year now. I am a massage therapist, ha it is not good for buisness lol. I have to ware long sleves and pants all the time. I have tried cream, meds, tanning beds, and salt baths nothing has worked for me. One day I get up and I think it looks better later that day I think it look worse. I have tried to keep my self-esteem, I just tell people the truth when they ask and if they dont believe me, oh well. I even find my self laughing on the inside when I know they want to ask but don't want to be rude but all they can do is look at it the whole time we are talking. Anyway luckly form me a have been married for a long time and my husband doesnt seem to really care one way or another. My boss calls me spot (ha). I would how ever like to talk one on one with some people who are dealing with this just like [email protected] please email me we need to stick together.:) thank you fro your time.(sorry for typos I can not spell)
magalietzaki

Saint-amand, Belgium

#13 Oct 5, 2010
bonjour mon fils zaki souffre de pityriasis lichenoide variolisiforme aigue est cela aussi appeler pleva,je comprend pas tout ce que disent les medecin ils ne sontpas trop inquiet mais moi oui si vous pouvez nous aidez
claire

Montmorency, Australia

#14 Nov 11, 2010
I've had PLEVA for over a year. Started as tiny spots, like a heat rash. Changed to larger, red spots and small, painful ulcers. Oral steriods helped, antibiotics didn't. Longer term, UV therapy three times a week all year has got it under control, with only a few spots appearing each week. at times I still get a few white, round spots which can peel off.I'll be continuing the UV therapy indefinitely.
Chrystal

Huntsville, TN

#15 Dec 2, 2010
Hey, I have had pleva since i was in the 5th grade. I am now 29 years old. My first breakout was from my neck down. I have never gotten one on my face. But I kept the horrible rash for over a year. They finally all healed up and went away, but I still get a few from time to time. Mine itch and hurt really bad. I currently have 4 sores. The thing I have found that helps the most is the tanning bed and keeping hydrated. Curel Lotion seems to help me the most. I hate having them, but at least I haven't had another break out. I usually only get one or two at a time. There was a time that I went about 3 years without any. I really wish that there was some sort of research going on that we could participate in. It might would help in finding a cure. My prayers are with you all :)
jaline

Philippines

#16 Dec 3, 2010
Ive had PLEVA for more than 10 years now.. Prior to diagnosis, dermatologists looked at my skin condition as contact dermatitis, skin asthma, anthropod bites and a lot more. lol my current doctor had me undergo blood tests (hepa profile, ESR, etc..) and a biopsy which had her TENTATIVELY diagnose this as PLEVA.. and i can say that she is really confused of my skin condition.. as i was reading different blogs and forums, i can say that THIS IS PLEVA. but 1 thing i don't quite understand is that it doesn't itch THAT much.. as of this moment i've tried doxycycline and tetracycline but to no avail. now, she ordered me another set of blood tests (SGPT, lipid profile and creatinine) and prescribed me with Clobetasol propionate (Dermovate) ointment.. i haven't tried it yet, just bought it this afternoon.. but i dont think this will work.. ive tried like a dozen of different creams and ointments with no positive result.. a new bunch of numerous spots still appear on my back, my legs, thighs, arms and now, my tummy.. i don't know what to do anymore.... :(
Russ

Derby, KS

#17 Jan 3, 2011
I work with insulation,not fiberglass,and started to get rashes that seem to come and go. I took all precautions to avoid any direct contact, all in vain.Thinking it might be the insulation. I'd get a cut and it would take forever to heal. Then I got a burn that had developed a rash around it.Finally after several trips to dermatologist, They did a biopsy--PLEVA was found. That was about a month ago, now after a couple weeks of Doxycycl HYC & Doxepin things seem to be getting worse. My itching is almost constant. My legs are covered with large spots, bright red. One spot is about 5 inches wide by 12 inches long.I would glady be a guinea pig to help research this thing and get it under control. UUUUUGGGGGGHHHH
Richard

Stalybridge, UK

#18 Jan 4, 2011
Russ wrote:
I work with insulation,not fiberglass,and started to get rashes that seem to come and go. I took all precautions to avoid any direct contact, all in vain.Thinking it might be the insulation. I'd get a cut and it would take forever to heal. Then I got a burn that had developed a rash around it.Finally after several trips to dermatologist, They did a biopsy--PLEVA was found. That was about a month ago, now after a couple weeks of Doxycycl HYC & Doxepin things seem to be getting worse. My itching is almost constant. My legs are covered with large spots, bright red. One spot is about 5 inches wide by 12 inches long.I would glady be a guinea pig to help research this thing and get it under control. UUUUUGGGGGGHHHH
Hi Russ & Everyone,
As you can see by my previous posts, my Pleva Fumhd was severe, and started by manic itching of my feet that drove me nearly crazy for 2 days and nights. Pleva seems to affect people very differently, some get itching and rashes, some don't but get the spots. Mine were 2 inch bubbles full of blood and pus. The thing is, the symptoms are different with everyone. Prednisolone was my saviour.(I know some people react badly to it.) Within 3 hours of taking it my condition began to reverse. I took it for 2 years to the week, reducing from 40mg down to zero very slowly. I finished the course on Nov 12th 2010, and 8 weeks or so on I have had no manifestation, but every little 'natural spot' fills me with dread. I did have side effects with the Pred but believe me, they were heaven to where I had come from. Headaches were the worse when I came down a dose, and mood swings were quite prevalent, although I could recognise these and managed to deal with them (mostly)!! My Dermatologist was brilliant. The worst type you can have are the 'not sure' or the 'try this for a while' ones. Don't put up with this condition, consult your local health authority and find an expert in Pleva. It will save you a lot of pain, and hopefully give you a better future too.
Tigre in Indiana

Crown Point, IN

#19 Jan 6, 2011
I was recently diagnosed with Pleva. Positive biopsy after 4 1/2 months of the rash that was very itchy and covered all of my body except my face, palms, and soles of my feet. If you know of any specific doctors that SPECIALIZE in Pleva please post asap. My doctors here are useless.
Heather

Cotopaxi, CO

#20 Jan 6, 2011
Hi Kei,

I have noticed mine have faded but not much. I have been taking vitiam D 1000mg so I'm hoping that will help. Other then that I haven't been to other doctor's cause I'm not sure where to go. I still get brake outs with the red spots. I'm at a lose for what to do. Thanks for replying. Every bit of advice helps.
Kei wrote:
<quoted text>
Hi Heather,
I Feel Your Pain. I was diagnosed with PLEVA 2 months ago and all doctors can tell me are to be patient. My second outbreak was def the worse! They were more like bruises than bumps and they took forever to heal. I could not walk or get out of my bed, it was so painful! Although Ive only had it for 2 months, the methotrexate seems to work better than the doxycylcine. Sorry I cant tell you much more, but I am new to this and I am trying to deal with it the best way that I can. My doctors said that this is one of the worse cases they have seen, it completly covered my face also! They said that the marks will eventually fade, but do they really fade away?

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