CJCJ

Saint Marys, GA

#546 Dec 15, 2010
I have have PLEVA for the past 6years. The sad part is I am a 40yr female and this is suppose to be a child or male disease. I have tried everything from meds to UV light therapy and the only thing that really worked was the light therapy. I had to stop that due to the increase risk for skin Ca. So now I am just dealing with it. If anyone has any info on non harmful or toxic things that can be done PLEASE let me know. I have heard already how I need to decrease stress. That won't happen anytime soon.
ashley

Spring Hill, TN

#547 Dec 15, 2010
joanna wrote:
<quoted text>
Laura-what medication was your daughter placed on? I've had pleva for about a year now but mine never itched or burned
Hi Laura...just read your post and thought I would tell you I, too, am in a similar situation as yours. My daughter was 6 when she was diagnosed. It took a month for them to decide...the dermatologist also told her it was bug bites, etc. The initial outbreak was extrememely itchy. The itch lasted for several months. They did put her on antibiotics and we went through light treatments 3 x's a week. As time went on, it did get a little better. It took about 3 months to get a handle on the outbreak. So, fastforward almost 2 years...and here we are. I was told, by her dermatologist, that she would probably outgrow it. Her bumps have faded but without lotion, she still feels bumpy. She will often have an old pleva bump turn red but no outbreak since the first one, knock on wood. Although I had hoped it would be gone by now, I am lucky that it's not as bad as 2 years ago. I don't think the dermatologists understand what exactly causes pleva. Most of them will not tell you that it is an auto immune issue...but I think it is. So, there is hope that your daughter will get better. I was told that the first outbreak is the worst and that was true in our case. We have not done light treaments since April of this year. I am hoping we can get through the winter without it as it tends to dry her skin out horribly. Good luck and hope this helps.
johnnylightning

Waunakee, WI

#548 Dec 21, 2010
hey my name is john and im 22 years old. ive been living with pleva on and off for the past 3 years. i usually get break outs that last up to about 9 months at a time. when i was diagnosed, my dermatologist prescribed me a few topical steroids. one that worked the best was taclonex but it did not help too much. a new breakout started a few weeks ago and its the worst ive ever had it. i usually only get it on my arms and legs but now its EVERYWHERE. my hands are covered as well as my feet and face along with my arms and legs. my back is completely covered as well. im tired of using these steroids that dont work. i heard that uv light works and i was thinking about going to the tanning salon. i dont have health insurance so going to the dermo is very expensive. i also heard that anti-inflammatory drugs such as erythromycin and prednasone help but do not cure it. is there anything else i can do? im running out of ideas. thank you.
Barb in Naramata

Penticton, Canada

#549 Dec 22, 2010
Hi John.
I really feel for you but don't have too much to offer other than hang in there. I got diagnosed with this about forty years ago when no one knew anything about it and we don't really seem to know much more now.
I have always just put aloe vera on my skin. I find that I don't shower as often as most people because my skin gets so dried out, but when I am not plevered I loofa quite hard to keep some circulation going and this seems to work. I tried most things over the years. The only thing that seemed to help me was Gabapentin ( I think you have a different name for it where you live ). But this seemed to help the termoil going on inside me because I get inflamed in my stomach and legs. It helps my nervous system I think which is what sets my plevers off. I have a great Doctor who is willing to try anything, including researching it on the internet because in all the years he has been around I am the first and only patient he has with the damn thing. I do know that being out in the sun helps because for a couple of years I stayed out of it because I also had a number of skin cancers and came down with a real bad dose of it. So now I get out there , get a sun tan and hell with the cancer thought. I also have shots of B vitis because I can;t take the pills, I pass out taking them. I take vitamin D which I think helps and I really watch what I eat. Other than the pleva , high cholestrol and slowing kidneys - a function of older age - I have had a good life. So don't despair. It doesn't appear to be terminal if you keep in good shape bodily and mentally. I know it is hard at your age to believe that just doing that will work, but there are others of us around who have coped and had a good life with doing fairly simple things to keep going. Hugs for the Christmas season to all
Colton Raines

Eugene, OR

#550 Jan 4, 2011
I was diagnosed with PLEVA when I was 18. I am now 21 and still have it. During this time, I have tried everything from antibiotics to steroids and external creams. I usually have between 5 to 15 at any given time but it seems to cycle from better to worse. It is usually worse in the winter due to little UV exposure. I have tried UV treatments and it seems to help but is far from a cure. I was in high school playing sports, lifting regularly, and in good physical shape when I noticed a spot on my upper leg. It seemed to gradually worsen and became a huge pain in the ass. I was irate with seeing doctor after doctor and they all told me different things from shingles to exe-ma. I knew they were wrong because I have had dry skin all my life but not PLEVA. I then began to try to solve the problem using natural remedies. It seemed to help but they still were showing up. I then began to watch my DIET and noticed that when I ate certain foods I would get new spots. At about the same time I found a specialist at the University of Utah hospital and began seeing him regularly. I advised him that I thought my diet set it off and believed I was allergic to many things we all eat daily. Dr. Zone then tested me for a range of allergies and discovered I am allergic to Wheat (gluten), Dairy products and Eggs. It was a bombshell because those items are in just about everything in a normal diet. I began to eliminate those foods and found I feel a lot better and digest foods better as well. As for the PLEVA, it is still around but is definitely improving.
If you are struggling with PLEVA I would recommend being tested for allergies, UV treatment, and I routinely take Vitamins B, C, D, and Krill oils. I cant say if it is the cure but whatever seems to help I stick with. I was told it is a adolescent disease but I don't buy it. Everyone has different biology and doctors aren't always the answer. Don't be afraid to try things that aren't prescription drugs.
If anyone has additional tips I'd love to hear about them. I am going to try a liver cleanse as well as completely eliminate alcohol and see if that makes a difference. Hope my experiences and suggestions can help anyone who has to deal PLEVA because it's terrible.
paul e hampstead nh

Salem, NH

#551 Jan 5, 2011
johnnylightning wrote:
hey my name is john and im 22 years old. ive been living with pleva on and off for the past 3 years. i usually get break outs that last up to about 9 months at a time. when i was diagnosed, my dermatologist prescribed me a few topical steroids. one that worked the best was taclonex but it did not help too much. a new breakout started a few weeks ago and its the worst ive ever had it. i usually only get it on my arms and legs but now its EVERYWHERE. my hands are covered as well as my feet and face along with my arms and legs. my back is completely covered as well. im tired of using these steroids that dont work. i heard that uv light works and i was thinking about going to the tanning salon. i dont have health insurance so going to the dermo is very expensive. i also heard that anti-inflammatory drugs such as erythromycin and prednasone help but do not cure it. is there anything else i can do? im running out of ideas. thank you.
Hi John . Sorry about your
Pleva, I can only make a suggestion. My Pleva was just as bad, I am almost cleared up ..
I had PUVA LIGHT TREATMENTS . It worked for me . I still have a few treatments left., but
90% of my body is clear... You might want to discuss this with your dermot.... Best of luck to
you...
Cheryl

Baton Rouge, LA

#552 Jan 14, 2011
My 6 year old daughter was diagnosed with PLEVA yesterday. I am trying to learn as much as i can about this. I never dreamed that the biopsy would come back positive or that it would be anything other than some sort of bites. My biggest thing is my baby dealing with the sores on her body. Right now we are being treated on a 14 day trial with an antibiotic and a topical lotion. I have cried all day because i think about what she is going to have to deal with from reading some of the stories on here. My heart goes out to all of you. Her case is not as severe as some of yours are but she has plenty sores scattered over her body. we just found one on her face. I know there are so many worst things we could be dealing with, but i just worry about how bad will it get. Does anyone know of anything we should or shouldn't do to help it? and also, why am i soooo upset over this :(
ipie

Tauranga, New Zealand

#553 Jan 16, 2011
Cheryl,

My 7 yr old son was first diagnosed with Cutaneous Lymphoma from a biopsy, but after a second clinical opinion we got told it was Mucha Habermanns disease.
my 7 year old has been having treatment of antibiotics for 3 months now.
It took 4 weeks before the spots even started to go away, if anything he looked like he was getting more. He was COVERED in spots since April 2010.
Then suddenly over 2 days I could suddenly see he wasn't getting any new ones, as the old ones got smaller and changed.
He now has a small amount of spots and when they do come they are smaller and not itchy.
Unfortunately the antibiotics upset his stomach, so I don't know how long he can go on for.
We also had to change from the Pink liquid antibiotic to a crushed up white one in some yoghurt, as the pink stuff really affected his behaviour. He has Asperger's syndrome and after the liquid antibiotics he would have lods of meltdowns, but we were told it had bright red food colouring and Aspatarme which either of those could have affected him. Switching to the crushed up tablet made a huge difference.

We were told to still keep the original diagnosis of Cutaneous Lymphoma in the back of our minds (like we could ever forget it....I will never forget the day I got told that).
We are going to go for a third opinion, even though the antibiotics are working and keeping the spots at bay, I cannot get the original diagnosis out of my head, and don't want anything overlooked.

None of what I have written probably helps you, but I just wanted you to know there is another mother out there who understands the worry.

My son now has hypopigmentation where the lesions were, and he also has a big scar from where one of his spots became necrotic, but they are not too noticeable, but for a girl, I can understand not wanting to have scars etc, but I was assured alot of these would fade.

Hang in there.

Since: Jan 09

Valdez, AK

#554 Jan 16, 2011
ashley wrote:
<quoted text>
Most of them will not tell you that it is an auto immune issue...but I think it
The reason I post on this thread is because I, too, strongly suspect you are dealing with an autoimmune issues such as would be caused by glycol ether exposure. Exposure would be flu symptoms, I call it 'chemical' flu. There are so many ways to be exposed, but those who clean their homes a lot are exposing themselves and everyone in the house. Stopping new exposures is vitally important. Early on I suspect gamma globulin IV would help. How to recognize and recover from 'the chemical flu' doctors don't recognize: http://www.valdezlink.com/re/flu/help.htm
Barb in Naramata

Penticton, Canada

#555 Jan 17, 2011
A quick note.
I'm not sure that antibiotics do anything to help stop PLEVA, but will stop infections if any of them go bad. Recently I have had a small outbreak. I have not used FUCIDIN for a while, leaving them to get along with their life cycle until they fade out, but these were sore and desperately itchy. So I have been using the FUCIDIN and it sure makes them feel better.
Sue H

UK

#556 Jan 18, 2011
Barb in Naramata wrote:
A quick note.
I'm not sure that antibiotics do anything to help stop PLEVA, but will stop infections if any of them go bad. Recently I have had a small outbreak. I have not used FUCIDIN for a while, leaving them to get along with their life cycle until they fade out, but these were sore and desperately itchy. So I have been using the FUCIDIN and it sure makes them feel better.
I agree absolutely about pleva and antibiotics. My second outbreak is receding (says she hopefully!) Antibiotics may help secondary infections,- but so does fresh aloe leaves if you can get them. Tea tree oil works well on small new spots, but needs to be repeated regularly, it will take them down. Boosting immunity is the key here, of that I am sure.
Lindadiane

San Fernando, CA

#557 Jan 24, 2011
The doctor put me on so many rounds of antibiotics that my hair got brittle. They did not cure the Pleva. Only helps get rid of infected ones.
The Cure

Bangkok, Thailand

#558 Jan 25, 2011
Colton Raines wrote:
I was diagnosed with PLEVA when I was 18. I am now 21 and still have it. During this time, I have tried everything from antibiotics to steroids and external creams. I usually have between 5 to 15 at any given time but it seems to cycle from better to worse. It is usually worse in the winter due to little UV exposure. I have tried UV treatments and it seems to help but is far from a cure. I was in high school playing sports, lifting regularly, and in good physical shape when I noticed a spot on my upper leg. It seemed to gradually worsen and became a huge pain in the ass. I was irate with seeing doctor after doctor and they all told me different things from shingles to exe-ma. I knew they were wrong because I have had dry skin all my life but not PLEVA. I then began to try to solve the problem using natural remedies. It seemed to help but they still were showing up. I then began to watch my DIET and noticed that when I ate certain foods I would get new spots. At about the same time I found a specialist at the University of Utah hospital and began seeing him regularly. I advised him that I thought my diet set it off and believed I was allergic to many things we all eat daily. Dr. Zone then tested me for a range of allergies and discovered I am allergic to Wheat (gluten), Dairy products and Eggs. It was a bombshell because those items are in just about everything in a normal diet. I began to eliminate those foods and found I feel a lot better and digest foods better as well. As for the PLEVA, it is still around but is definitely improving.
If you are struggling with PLEVA I would recommend being tested for allergies, UV treatment, and I routinely take Vitamins B, C, D, and Krill oils. I cant say if it is the cure but whatever seems to help I stick with. I was told it is a adolescent disease but I don't buy it. Everyone has different biology and doctors aren't always the answer. Don't be afraid to try things that aren't prescription drugs.
If anyone has additional tips I'd love to hear about them. I am going to try a liver cleanse as well as completely eliminate alcohol and see if that makes a difference. Hope my experiences and suggestions can help anyone who has to deal PLEVA because it's terrible.
Hey buddy I had a post similar to yours about diet being the root of the problem a while back! I figured it out when I stopped eating dairy... I wish these people on here would listen to us and change their diet and stop eating processed foods. Once watched my diet my PLEVA disappeared completely!! I might get a couple of spots here and there if I am careless and eat the wrong things but I can manage it.

PEOPLE CHANGE YOUR DIET!!!!!!!!!!
Ace

Madison, WI

#559 Jan 26, 2011
Hm, I was suggested I might have PLEVA but never officially diagnosed. My sores do not itch, but they look just like PLEVA sores on the pictures; somehow most of them are on my neck, and my lymph nodes are swollen too. The antibiotics did nothing except make me more sick. Right now I am using generic benadryl (seems like the only thing that helped so far), but will also try more exercise, a better diet and relaxation. Testing for allergies is also a good idea, as PLEVA is an immune system disorder manifestating itself as a skin disorder. Interstingly enough, I got only one sore, which kinda stayed there, until I got my immunization shots this fall, and soon afterwards I got a BAD outbreak, which did not quite clear up since September :/ So immunization shots can probably be a trigger, since several people already pointed to the connection- and it makes sense, too, from the biological point of view.
Victoria

Birmingham, UK

#560 Feb 5, 2011
I was diagnosed with Pityriasis 3 years ago, it was very lucky that I was heading on my hols a couple of days later as the sun worked wonders on my skin. About 3 weeks ago small red blotches appeared on my skin they appeared like hives then spread and flattened. At first they was itchy, then they sort of scabbed over and were stingy and very sore. The worst of my outbreak is on my face and scalp, here they are sore. The ones on my body don't bother me at all they were the first to appear and are the biggest and can be as long as 1/2". I was trawling through the net trying to work out what my condition was when I came across this site and think I could have PLEVA. Althoug saying this I'm not sure as some of my lumps are flat and some are raised like blisters and they are a very angry red colour. Will let you all know how I get on at the Doctor in a few days time. And yes this really really SUCKS!!
Barb in Naramata

Penticton, Canada

#561 Feb 6, 2011
Hey Victoria.
I have had things that look like you describe over the years. I have thought they are mosquito bites, flea bites and all sorts of other things, but I have had a few biops and they all turn out PLEVA. I have some that look like all the photos on the official pages, but over the forty years I have had this I think I have had every type invented. A few years ago I had some that looked like strawberries. They have been the most exotic looking ones, but they were PLEVA as well. I have had a number of skin cancers, but they are different from all the PLEVA things. Anyway. Good luck with yours. Oh, Some itch, some don't, some head, some bleed, some crust over. What have I left out?
Emily

Killeen, TX

#562 Feb 22, 2011
My grand-daughter was diagnosed with Pleva just today. From reading your posts, I wonder if this is a vitamin D deficiency. Anyone know? Also, I have heard that it was associated with toxoplasmosis which can be acquired from cat litter, or any warm- blooded mammal like guinea pigs and hamsters. My grand-daughter has a hamster and she (as of today) no longer cleans is cage.
Tam

United States

#563 Feb 27, 2011
Lindadiane wrote:
Well, there appear to be two common threads.....immunizations and elevated cholesterol Hmmmm....
My son, age 8 has recently been diagonised with PLEVA as well. Just before school started, first week of September, he had a fever and strep throat like symptoms for about a week. He had a strep test but it came out negative. After that he started getting spots but I thought that it was a heat rash (he just started tackle football with all that equipment). When I brought him in, he was diaginosised with Pityriasis Rosea(PR). Which made sense at the time. Well,(PR) goes away, this did not. He then went to a derm. and was then diagnosis with psorisis. Finally, we went to another derm., he did a biopsy and found out it's PLEVA. He was originally on erthomyicin for 8 days, 3 x's/day and topical, mometasone furoate cream, put on twice/day. He also has it on his face, which we use 2.5% hydrocortosone at night only. It almost went away so the derm. decided we should try again. One week later, it's erthomyicin 3x's/day - 7 days then 2x's/day - 7 days, 1x/day - 7 days. We are now on the second day of the 1x/day. It's gone away quite a bit but there are still bumps. I am going to try watching his diet the final week and see if that helps. His next visit to the derm is in March, I will ask to have his chloresterol checked. Any other suggestions?
mommajudy

Addison, TX

#564 Mar 8, 2011
i've had the "im so tired i can't stand it", stiff joints and a horrible rash for more than 2 years. just diagnosed with pleva. doing the light treatments 3 times a week. going on 2 months now. it is helping the ones that are / were there but does not prevent new breakouts. just started methotrexate. taking four 2.5 mg. along with folic acid.
i've been told this is rare. hate to know anyone else would have this, but glad to see i am not wrestling alone.
i'm 53 and female.
hope this helps..........
Vanessa

Santa Clara, CA

#565 Mar 10, 2011
I too was just recently diagnosed with this disease. From what I was told is that it is not contagious and no one else in your family will get it from you. The fact that you have two people in the same household that have it is a very scary thing to hear! I have two little boys 4 &9 so if they got this i would die. It really is unbearable to live with. I feel at times like I have Leparsy! I can not bare to look at myself without any clothes on anymore! I have been put on Tetracycline, topical Cortisone cream, and was given a Cortisone shot for the inflammation.. so far it has cleared up A LOT.. but not completely.. Knowing that I will have this forever kills me!! it is humiliating and just looks ugly.. I was asked if I had AIDS even asked if I was a Meth User!! Which I do not have and have never tried! I wish there was a permanant cure for this disease! if anyone finds one post your doctors name and number please!! Thanks

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