Hello all...this is my first time posting here, I have been lurking around a couple of days and finally decided to jump in with my question... I found out on Monday that I have PLEVA- also known as Pityriasis Lichenoides et Varioliformis Acuta or Mucha Habermann's Disease. I have searched and searched trying to find someone else with this, or just someone that I can talk with about it.
Anyone out there have any experience with Pleva?? THANK YOU! Weezer
Hi Weezer There are several here who have PLEVA. I myself, was diagnosed in January after seeing several doctors over the course of months who had no clue. As of now, I have no active lesions and am doing much better. There are a few message boards out there (see the links below) that have quite a few people on them dealing with PLEVA as well. If I can be of any help...let me know, I check in here several times a week. ~aria http://www.skincell.org/yabbse/index.php/t23.php http://www.glory-of-the-garden.com/plevinfo.htm http://www.myskin.4t.com/mystory.htm
"KLReach" <klreach@aol.comnospam> wrote in message news:20041210221813.08116.00001927@mb-m05.aol.com...> Hello all...this is my first time posting here, I have been lurking around
couple of days and finally decided to jump in with my question...> I found out on Monday that I have PLEVA- also known as Pityriasis
Lichenoides> et Varioliformis Acuta or Mucha Habermann's Disease. I have searched and> searched trying to find someone else with this, or just someone that I can talk> with about it.>
Anyone out there have any experience with Pleva??> THANK YOU! Weezer
There are several here who have PLEVA. I myself, was diagnosed in January>after seeing several doctors over the course of months who had no clue. As
Aria, thank you so much for your answer. I had never heard of this and I Have searched all over the place for information. I haven't looked at all of the websites yet that you listed, because when I looked at the first one I found pages of letters from others. It was just so reassuring to hear the stories of others. I didn't know exactly what to expect..and, I guess really I still don't because each case seems to be different, but I do feel more at ease about the whole thing. Thank you again so much. I had Googled and Yahoo'd and Dogpiled and none of them led me to that site. Thank you!!!! Weezer
"KLReach" <klreach@aol.comnospam> wrote in message news:20041211142545.06333.00001555@mb-m18.aol.com...> >There are several here who have PLEVA. I myself, was diagnosed in January> >after seeing several doctors over the course of months who had no clue.
Aria, thank you so much for your answer. I had never heard of this and I
Have> searched all over the place for information. I haven't looked at all of
websites yet that you listed, because when I looked at the first one I
found> pages of letters from others. It was just so reassuring to hear the stories of> others. I didn't know exactly what to expect..and, I guess really I still> don't because each case seems to be different, but I do feel more at ease about> the whole thing.> Thank you again so much. I had Googled and Yahoo'd and Dogpiled and none
them led me to that site. Thank you!!!!> Weezer
When I was first diagnosed, I drove myself insane trying to find information. I spent hours going through search engines and medical sites trying to find just one thing that would explain all the symptoms, tell me what caused it, and how to fix it. My derm. tried antibiotics, i have an entire basket of creams, ointments, and other goop, and finally we did UVB light treatments. And though I consider myself an athiest, any offer of prayer was appreciated too. I honestly dont know what made it go away, everything I read said that it is a self-limiting condition (which apparently means it will just go away eventually). What I was told was that even though its gone now, it may or may not come back. Not too reassuring. But being that the condition is considered rare, I guess there isnt much interest in researching it. Hang in there. Dont let it get you down mentally and emotionally. And again, if there is anything I can do or info I can provide, just email or post. I do not disguise my email address, so mail sent will be received.
I went to seven doctors before they figured it out. Those were possibly the two worst months of my life where my arms and legs were covered with blisters. I layed around with a towel covering my body for most of that time cause it was too painful to move.Its been almost a year since I got it and my body is still covered with scars. I hope it never happens again.
Aria - do you think the UVB treatment is ultimately what helped you? Please let me know your thoughts on what you think was something that truly helped you.
hey!! i struggled with pleva for about 2 years! dr. told me it may or may not ever go away!!i tried creams..tetracyclin all that great stuff!! but i really did do something that changed my life!!! i went with some friends to the tanning booth one day and came out scarred that i had done something bad because the spots had turrned a little white? but about 15 min after it looked better then when i went in to tan! the next day it was almost gone!! now im living life normal and i dont walk around so self councious!! sometimes i still get a bump here or there and it will scab over and then.....nothing! so maybe tanning will work for you? i went in for 10 min! with tanning lotion!! IT WORKED FOR ME!!! well BEST OF LUCK TO YOU!!! nelliebellie04@hotmail.com feel free to e mail me! ~Daniele
only one 10 min session? sounds like you are really quite, quite lucky indeed. i've visited about 8-10 times so far. i've found several helpful and encouraging articles as well. if all goes well, i will compile these articles along with what i've specifically done and put them online.
yeah you know everyone is differant! the tanning booth may work with me but not for you?..OH but you know what? i was taking tetrecyclin and had stopped treatment about 3 days before i had gone tanning..maybe that had something to do with why it worked so well for me??? all i can say is dont give up on finding a treatment that will work! and i know the one of the hardest things for me was dealing with peoples reactions to my skin,i had just moved to sacramento and had PLEVA...people at school would call me "toad" but i really did realise who my true friends where.......and you know it doesnt matter what people think about you...well BEST OF LUCK TO ALL!!!!! I hope you all finde a cure! ~Daniele
OH I HAVE A QUESTION!!?!! DID ANYONE HERE HAVE SHINGLES BEFORE PLEVA??? I DID? I WAS JUST WONDERING IF THEY MAY BE RELATED..ALSO BEFORE I HAD SHINGLES I HAD MONO?? HUH.....THE WORST 4 YEARS OF MY LIFE!
I tried UV treatment and it didn't really do anything for me. When I got them they broke out all over my arms and legs in a solid mass, it looked like I had been badly burned. I don't know how they broke out on everyone else, but it was unbearable. I was put on prednizone and some other stuff, but none of it seemed to work. The doctors just told me that it would work its way out of my system eventually. About 3 months later they were gone, but my body is still scarred all over with spots. I thought at first that I too had been bitten by a bug or something. This all happened about a year ago and just lately my body has started to itch again and I hope they don't return. When I first got them I was sick from pnuemonia, but none of it makes sense to me. I had also spent a lot of time on islands in another country
I was diagnosed with PLEVA over two years ago. It took a biopsy to diagnose PLEVA. I have been on every antibiotic, cream, and ointment you can think of. I was taking Methotrexate for over a year and it did seem to keep my "break outs" under control. I did have to have monthly blood work done because Methotrexate can harm the liver. About eight weeks ago, I started breaking out again, I guess my body had done all it could with Methotrexate. I am now trying Imuran, but it is suppose to take several months to know if it works. I'm thrilled to have this site to discuss PLEVA with others. Thanks.
Hi, I just received my biopsy from the lab and the diagnosis is PLEVA. I've only just been reading what everyone has written and they all sound like my story except for a few differences. I get breakouts of large blisters on the soles of my feet...making it very painful for me to even walk.....and I've also had some on my arms, legs, face, and scalp...but only a few not as much as on the soles of my feet. Has anyone found certain types of foods or natural medicines that have helped? Andrew
I am new to this site,{censored} was just diagnosed with pleva yesterday. I am looking for as much information as i can find. We saw 5 different doctors all of them kept telling me it was chickenpox. finally we saw the dermatologist and she told us what it was. {censored} is 5 years old she has had this rash on {censored} since 7-25 and everyday its gotten a little bit worse.
My 6 year old son was diagnosed with Pleva almost a year and a half ago. We thought it was chicken pox as well as the doctors and treated it as such. When he still complained of itching and it appeared he wasn't getting any better, he was referred to a dermatologist. The dermatologist did a biopsy of the skin and that's when we found out he had Pleva. We had never heard of it and were unaware of what caused it. He was treated with antibiotics, creams, bath solutions and some sort of spray (water) to use after baths. He got better over about a week + but every so often Pleva is back again. There is no known cause and it is very irritating to the skin. My son has an outbreak right now. This time it's only on the left side of his body (leg/thigh area, butt cheek and foot) as opposed to other times when it's over just about all of his body with the exception of the genital areas. Does anyone have suggestions other than prescribed medications that can help soothe these irritations?
I just found out that I have PLEVA. It's horrible, summer is starting and I'm embarrassed to wear short sleeves. My doctor gave me antibiotics and creams but they're not helping. The worse thing is that it's so hard to find information. Are the spots going to go away? If they are, then when? I try not to be vain but it's difficult. Can anyone can give me any info? Thanks
I was informed by my Doctor yesterday that I have PLEVA. I noticed the red dots one day after returning from a cruise to alaska....do you think they is any relation? Perhaps a parasite?
Hello, I've had PLEVA, extremely severe, for a month now, and it started a day after my cruise to Alaska.....did you go on Priness Cruises? Please email me, ncm1@stmarys-ca.edu
Hi I too was diagnosed with pleva three or four years ago. I have very small blister like lesions, that eventually bust either from me scratching them or they just do it on their own sometimes. They turn into scabs, however the scabs will fall off easily when I get in the shower and wash so they just get bigger and bigger and last for months and months and it is a constant struggle to get them to heal. They have gotten as big as a nickle at times. They itch like crazy and are cosmetically embarrising. Ive pretty much gotten use to people starring though. It looks like I have leprosy sometimes. I am allergic to erythromyecin and tetracycliene which is a bummer because it is supposed to help. The only relief I get is to lay in the tanning bed which is both expensive and unfortunately bad for my skin in the long run. I do also have the little white hairs that release painlessly.
Hello Weezer, My sister was diagnosed with PLEVA about 8 months ago. She has a pretty severe case of it. You may contact me if you like to talk about it. God Bless, Firenurse
Dear weezer, I have recently been diagnosed with pleva too. I was diagnosed around the end of january. I went to many doctors who said it was just allergy related then went to a skin dermatologist and she performed a biopsy and told me what i had. She said she wouldnt help me..... i then went to a different doctor and he said he was going to start be on puva treatments immediatly. They do help me but it very small increments. you see i have it on my arms, torso, and all over my legs. I dont know what i am going to do this summer. it has helped but it makes me very tan so where the pleva has come off its super light and now i look like a leopard. Not so attractive either. but i must admit so far that has been the only help i have gotten so if you can find a dermatologist with that technology bring that up. message me back if you have any questions or want to talk. Jinx
Anyone on here want to help me? I'm sorry to be adding comments and adding this but this is my first time on this site and no one seems to understand. A friend told me about this site and it seems there are more people than i thought that have pleva and i dont feel as alone. How do you guyz deal with this?! I cry a lot I'm embarrassed to wear short sleeves and i'm scared to be around my bf cause im so self concious. help me plz. thinkblacky@yahoo.com
my 3 yr old son was just diagnosed with pleva. anxious to hear about body aches (legs, stomach, back/spine/neck) and any accompanying fevers (started about 8 days after onset of rash and comes and goes (spikes hight, then low grade). any commments would help
ok y not i recommend u to take transfer factor...u can go to tiz website www.4life.com u can mail mi at muzaffar_4life@yahoo.com...i tink it helps...thanks
hi i have had pleva for 1yr and 7 months, it is due to your emune system. the slightest little stress or cold brings it on. you exsperience stomache cramps, your whole body aches, dont feel like eating. when i get full stomache cramps its another out break. some have it for 3 monts or less some can even have it for the rest of there lives. In which that is my case. You would have been put on antibiotics, and told to soak in salt bath. and try to go out to the sun to dry them up. If this helps any i hope so.
Hi. After having these sours all over the front of my legs and upper thighs, I've finally found out I have Pleava. I asked my dermatologist about this over a year ago, as I was concerned because of my diabetes. She seemed unconcerned saying she didn't know much about it and had nothing to cure it. I pointed it out to my MD and he seemed more concerned. He asked if my dermatolotist was and if the sores had been seen, I told him and it is a Dr. in his Practice he'd recommended to me years ago. He called them, got me in again, they took a biopsy, and I learned yesterday that it's Pleva. Yesterday I got a prescription for Minocycline H at 100 mg. I'm to take one twice daily and I have an she insisted I see her again in a month. I also read that ultraviolet light sometimes helps, so I was thinking about trying sunshine but decided to wait until the month is over so we can see what exactly the pills did. I hope this helps someone.
I was diagnosed with PLEVA in November of 2007. I was put on antibiotics at first and they didn't do anything. Then in December I started going to photo-therapy 3 days a week...which was extremely time consuming. That only, was not doing anything. So in January 2008 my dermatologist put me on methotrexate, in combination with the photo-therapy. I was on this combination for 2 years. The combination of photo and 17.5mg of methotrexate worked very well. However, after 2 years of being on such strong medication, I went to a specialist in January 2010 to see if there was anything else I could do. I was so disappointed when she said no, either I stayed on the same course of treatment or live with lesions. I traveled to a yoga spa in Central America two weeks later. There, I consulted with ayurvedic therapists and they gave me all natural suggestions to help with my skin "disorder". One of the MOST wonderful things that I was advised to do was to give myself dry brush massages every morning before taking a shower. I was told to rub coconut oil on first and starting at the feet make circular motions upward toward my heart. I was at the spa for 8 days and decided that I would stop going to photo when I returned home and also stop the methotrexate. I have not taken the pills in over a month and have been diligent of the dry massages every morning and I can not believe the results. My skin was all spotted from the lesions that had dried up due to the photo. All of the spotting has disappeared and no new lesions have formed. Before this, I had been unable to go without the methotraxte for more than 1 week and a half before new lesions would start to form, and the phototherapy for more than 2 weeks. The only other thing that I do different since my trip, is I drink coconut water (you can buy the young coconuts at wholefoods or asian markets). Since these things are all natural I thought I would share them, they can't hurt and have given me amazing results. (Please note: When I started the dry brush massages, my lesions were under control b/c of the methotrexate... so please only start the dry massages once you have no scabby lesions or else you will pull off all the scabs and that can be incredibly painful).
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