PLEVA, Mucha-Habberman's disease
Rene

Christchurch, New Zealand

#760 May 22, 2012
Hi Angie,
my 8yr old son also gets hypopigmentation once his spots have faded, he has loads of them now. He has pale skin already but the hypopigmentaion is noticeable.
His Pleva began almost 3 years ago, he had spots covering his whole entire body.
At the time of his biopsy it came back that he had Cutaneous Lymphoma, that is what the biopsies look like under the microscope, but they said that Pleva looks the same.
They combined that with his clinical features and changed his diagnosis to Pleva.
We did Antibiotic therapy on and off for a year mixed with probiotics and a gluten and dairy free diet, and most of his spots are almost gone. he does get a crop up every now and then, but for the most part they don't bother him.
lynn

United States

#761 May 25, 2012
I was diagnosed with pleva when I was 15 I am now 28 I haven't seen pleva since I was fifteen until NOW I thought I had beat it.. Its not as bad as it was when I was first diagnosed but it is very bad on my torso thank god that is usually covered I also seem to have a bigger one than normal maybe the size of a quarter or slightly bigger..this was the first one I seen..I have been tanning twice this week I'm becoming desperate as a party approaches that was planned months ago..I took a bath in sea salt today and actually rubbed it across my whole body I'm willing to try anything to beat this disease!!.I have been stressed lately and have had an irregular menstral cycle this month I wonder if this is what stirred my pleva up again? Any similar stories do tell!
Marcella

Midlothian, IL

#762 May 29, 2012
I have had a skin problem now for a little over 11 years.
Went to my first Dermatologist and he said he thought it was mites. After two fumagations, I still had the skin problem.
Went to another Dermatologist and he said I was doing this to myself. Even though I said I wasn't. Mind you the skin problem started on my back. So I just didn't buy that. He even had articles about how great he was at solving skin problems all over his wall. He put me off Dermatologists for quite a while.

Finally, last year, I was sent to Dr. Mandrea & Assoc. Finally got a diagnosis of Pleva. When it started to show up on my legs and arms, I finally got to see them and to me it all looked like chicken pox.

The only good news is I have diagnosis. The bad news is there is no cure. I currently am on Doxcycline and taking light treatments. Doxcycline works a little. It calms them down. I also use triamcinolone cream for the itching. I thought the light treatments were working but after over 40 treatments to date, I just had a big breakout on my back. I have scars all over my arms and back and behind and some on my legs.

I guess I will be seeking help for this problem until I die unless someone can figure out why one gets it and a cure for it. Like yourselves I am stuck with Pleva.

Great site. I was feeling very alone with no one to talk to about this.
Angie

United States

#763 Jun 6, 2012
Thank you for your response Rene. Have any of your son's hypopigmented areas gone away over time? My son normally gets dark scars that fade but this hypopigmented area is completely different. I'm hoping that the summer sun will help. Are your son's hypopigmented areas the size of the original pleva spot or larger? My son's spot is larger then the original pleva spot? Luckily the spots don't bother him- I'm the worrier :)

Angie
Rene

Christchurch, New Zealand

#764 Jun 7, 2012
Hi Ange, my sons hypopigmentation is slightly larger than the original spot, and they haven't gone away even after 2 years. But since his skin is so pale already they are not that noticeable, its more me that sees them. Like your son, my son doesn't care either!
I was told by his Dermatologist to make sure his skin is moisturised, but he hates putting any cream on his skin, but I do try. I have heard that rosehip oil is good for scars, and i have been using on my own old acnes scars and it has helped, so perhaps it will help.
I am wondering if over time the loss of pigmentation will go away and the skin recover in those areas, or whether the inflammation has damaged that area of skin forever?
Cindy

Downey, CA

#765 Jun 9, 2012
Hi Rene and Angie. I have had PLEVA for 6 or so years now. I never used anything on my skin either for it always felt heavy. A friend of mine got me to try Rich's MSN Cream. It was much lighter then Anything I had ever tried before. My skin is now moist and looks much healthier were it was very dry before. I wonder if having dry skin prior contributed to me get PLEVA or the very least made the breakouts come more often. I still get PLEVA but it is just a couple here and there. Mostly on my hands, arms, and legs.
Recently I am trying Cetaphil cream. I put it on lightly and I like how it feels. It's not heavy or greasy like so many others.
Maybe these two suggestions may be of help to your situations and your child.
Like so many others the Dr.s had me try everything... Pills, light therapy, creams.Light therapy worked but after I stopped,(gas prices and I had to drive a long distance 3 times a week,)it came back. Another DR told me to get out in the sun more. I did realize that because of skin cancer scares within my family, prior to and during my outbreak, I became an indoor person. That probably was not the right thing for me. So now I do get out in the sun more. Early morning sun is very good for me.
I feel better emotionally and I have less outbreaks.
Hope this is helpful.
Rene

Christchurch, New Zealand

#766 Jun 10, 2012
Thanks Cindy,
We have also tried Cetaphil, but the problem with him is more of a sensory issue of putting the cream on his skin due to his Asperger's syndrome. He HATES having cream on his skin, amongst many things.
I like Cetaphil, I find it is nice on the skin and not greasy at all. I also use the St Ives, Aloe and Chamomile for myself and find that is nice, and not greasy.

Thanks for your advice!
Kristen

Anaheim, CA

#767 Jun 12, 2012
It took me three months for doctors to finaly tell me what I had. I had one major break out that last for about 4 months covering my body with over 800 spots. Since them, if I am in sunlight or a tanning bed once a month and it really helps. I try not to take any medication and I always have around 15-20 on my body, but nothing bad. I recently noticed that I get brown sun spots on my hands or feet. They are large pataches not like my normal red spots. They last for over 3 weeks and end up peeling. Does any one else have this problem?
Barb in Naramata

Airdrie, Canada

#768 Jun 16, 2012
morning All.
Was wondering how Michelle in Perth Australia's son is doing.
I would be really interested to hear that everything has turned out for the good.
Having had the damn thing for many years I am always interested in hearing how other people are dealing with it.
As you know from my previous posts I am convinced that it is triggered by stress, and so to add more stress to it I don't think helps.
Anyway Michelle. If you should read this I would love to know how things are going. Hugs to all.
Angie

United States

#769 Jun 18, 2012
My son has had spots for over 4 years. Usually has only a few spots but over the last month has really broken out especially on his legs. He has at least 20 on his legs. Only other thing I have noticed is that his seasonal allergies have been bad. Anyone else have a mild case that got worse after several years? We didn't want to give him the antibiotics because his skin wasn't too bad but now I'm reconsidering.

Angie
Kim

Union City, CA

#770 Jun 18, 2012
Angie wrote:
My son has had spots for over 4 years. Usually has only a few spots but over the last month has really broken out especially on his legs. He has at least 20 on his legs. Only other thing I have noticed is that his seasonal allergies have been bad. Anyone else have a mild case that got worse after several years? We didn't want to give him the antibiotics because his skin wasn't too bad but now I'm reconsidering.
Angie
Hi Angie,

Have you heard of the Astragalus root? You can get this in pill for at any health store or just order it online (which is what I do). I take 2-3 a day and my skin is clear. I also take a daily multi vitamin and vitamin B for stress. Lastly, I drink yogi Immune Support tea, everyday. If I miss the Astragalus pill or tea, for even 1 day, I notice a bump or two arise. However, the next day when I take these, they completely disappear.

Depending on the condition of his skin at them moment, it might take 2 weeks to clear up, but please try this as I've had clear skin for the past 1 and 1/2!

Astragalus Root Vitamin:
http://www.swansonvitamins.com/SW504/ItemDeta...

Yogi Immune Support Tea:
http://www.vitacost.com/yogi-tea-echinacea-im... {keyword}
Julie

Morrison, TN

#771 Jun 24, 2012
My 19 daughter was diagnosised with arthritis at 14 and about 8 months later with PLEVA. It was a very difficult time for her and us. She did light therapy for 3 months and it helped but they were concerned about long term use. She was referred to Dr Jurrizo at Baptist Medical in NC who put her on methotrexate. He is brilliant and writes medical textbooks on diseases like PLEVA. She once had a flare at the beach and saw a doctor on an emergency basis amd then Dr. Jurrizo. He gave us his personal cell phone number and said call him next time so he can talk to the doctor that treats her. She now takes Enbrel for her arthritis and methotrexate for PLEVA and is for the most part symptom free.
Elica

Philippines

#772 Jun 26, 2012
Hi! I'm back to re-share my PLEVA experience. Hope this can help enlighthen everyone.

It was August 2009 when I started to wear metal braces. In December of the same year, I started to have blisters like chicken pox. It was January 2010, when I was diagnosed with PLEVA and started phototherapy (which worked for me). Good thing, it(UV Therapy) really speed up the course of PLEVA. I also took/used antibiotics, creams, Cetaphil lotion--name it-- BUT they all have short term effects. I had scars but it all disappeared eventually. It was few on the first breakout(January 2010) but it get worst on the 2nd (September 2010) and the 3rd (June 2011-hopefully the last) time. My new dermatologist had some additional tests to make sure what I have is PLEVA and still is. She suggested me to try Patch/Allergy test. 70 allergens were patched on my back then it turned out that I am allergic to metals. Four mixed metal elements are my inducers which are common components of my metal braces.

My derma says metal has delayed allergic reaction to the body. This is manisfested why my PLEVA came out December, which is 4 mos after I started to wear my metal braces. It can stay for 2-3mos in the body too, but it is naturally secreted. I also And since my metal braces were in my mouth, the allergic reaction had just its course over and over again. Good thing, my teeth are already fixed so it's okay to remove them.

Now that I no longer have the inducer of my PLEVA, I am expecting that it won't bother me again. I hope on the 9th month from my last breakout, I'm totally and forever PLEVA free!

Never lose hope! I know we will all get better. Just believe you will be cured and you'll be. Be patient finding what causes it 'coz I know it is triggered by something that you all need to discover.

Will keep everyone posted about my improvement. I hope my experience can somewhat help you Guys to not give up.

:)God bless everyone!

UPDATE: PLEVA no longer bothers me on its 9th month from my 3rd and last outbreak (June 2011). I'm now totally PLEVA-free! God Bless us all.
Kim

San Francisco, CA

#773 Jun 26, 2012
Elica wrote:
Hi! I'm back to re-share my PLEVA experience. Hope this can help enlighthen everyone.
It was August 2009 when I started to wear metal braces. In December of the same year, I started to have blisters like chicken pox. It was January 2010, when I was diagnosed with PLEVA and started phototherapy (which worked for me). Good thing, it(UV Therapy) really speed up the course of PLEVA. I also took/used antibiotics, creams, Cetaphil lotion--name it-- BUT they all have short term effects. I had scars but it all disappeared eventually. It was few on the first breakout(January 2010) but it get worst on the 2nd (September 2010) and the 3rd (June 2011-hopefully the last) time. My new dermatologist had some additional tests to make sure what I have is PLEVA and still is. She suggested me to try Patch/Allergy test. 70 allergens were patched on my back then it turned out that I am allergic to metals. Four mixed metal elements are my inducers which are common components of my metal braces.
My derma says metal has delayed allergic reaction to the body. This is manisfested why my PLEVA came out December, which is 4 mos after I started to wear my metal braces. It can stay for 2-3mos in the body too, but it is naturally secreted. I also And since my metal braces were in my mouth, the allergic reaction had just its course over and over again. Good thing, my teeth are already fixed so it's okay to remove them.
Now that I no longer have the inducer of my PLEVA, I am expecting that it won't bother me again. I hope on the 9th month from my last breakout, I'm totally and forever PLEVA free!
Never lose hope! I know we will all get better. Just believe you will be cured and you'll be. Be patient finding what causes it 'coz I know it is triggered by something that you all need to discover.
Will keep everyone posted about my improvement. I hope my experience can somewhat help you Guys to not give up.
:)God bless everyone!
UPDATE: PLEVA no longer bothers me on its 9th month from my 3rd and last outbreak (June 2011). I'm now totally PLEVA-free! God Bless us all.
This is super helpful! Thank you very much for sharing this positive story :-) I'm going to book an allergy test tomorrow! You are completely right that this is triggered by something.
Gem_from Philippines

Quezon City, Philippines

#774 Jun 29, 2012
Elica wrote:
<quoted text>
Correction: The 3rd and hopefully the last breakout I had was in June 2011 (not June 2010)----> God Bless everyone!
hi,can you tell me where i can find your dermatologist.. pls...thanks
alice thomas

UK

#775 Jun 30, 2012
Im 18 and only been diagnosed with pleva for a month but its already takimg over. I have a horrible rash everywere constantly feel tiered, have bery bad headaches ans joint pain 27/7. Im a student and I work as part of my course and being ill really isnt helping at all. Last night it got really bad and Im now laid in bed with a high temperature but Im really shaking (My sisters having to write this) I feel so sick and all my body aches and my eyes are burning. I feel that if I get any worse I need to go to hospital but is it worth it? Can they do anything for me I also havnt eaten or drank in 2 days I feel that sick. Please an answer would be loverly just dont wabt to waste the NHS time or services if they cant do anything x
Ann

North Vancouver, Canada

#776 Jul 1, 2012
Hi, Alice

It sounds to me like you have something more than Pleva affectng you. High temperature is a warning sign and I think you should see a doctor right away and you really do need to keep getting some liquids. I wouldn't worry about eating, but you can get dehydrated very quickly if you have a fever and aren't getting any liquids. Flat ginger ale is often something that people can drink even when they don't want water. And, as a last recourse, try sucking on ice.

Ann
alice thomas wrote:
Im 18 and only been diagnosed with pleva for a month but its already takimg over. I have a horrible rash everywere constantly feel tiered, have bery bad headaches ans joint pain 27/7. Im a student and I work as part of my course and being ill really isnt helping at all. Last night it got really bad and Im now laid in bed with a high temperature but Im really shaking (My sisters having to write this) I feel so sick and all my body aches and my eyes are burning. I feel that if I get any worse I need to go to hospital but is it worth it? Can they do anything for me I also havnt eaten or drank in 2 days I feel that sick. Please an answer would be loverly just dont wabt to waste the NHS time or services if they cant do anything x
Lindadiane

Duarte, CA

#777 Jul 1, 2012
Elica wrote:
Hi! I'm back to re-share my PLEVA experience. Hope this can help enlighthen everyone.
It was August 2009 when I started to wear metal braces. In December of the same year, I started to have blisters like chicken pox. It was January 2010, when I was diagnosed with PLEVA and started phototherapy (which worked for me). Good thing, it(UV Therapy) really speed up the course of PLEVA. I also took/used antibiotics, creams, Cetaphil lotion--name it-- BUT they all have short term effects. I had scars but it all disappeared eventually. It was few on the first breakout(January 2010) but it get worst on the 2nd (September 2010) and the 3rd (June 2011-hopefully the last) time. My new dermatologist had some additional tests to make sure what I have is PLEVA and still is. She suggested me to try Patch/Allergy test. 70 allergens were patched on my back then it turned out that I am allergic to metals. Four mixed metal elements are my inducers which are common components of my metal braces.
My derma says metal has delayed allergic reaction to the body. This is manisfested why my PLEVA came out December, which is 4 mos after I started to wear my metal braces. It can stay for 2-3mos in the body too, but it is naturally secreted. I also And since my metal braces were in my mouth, the allergic reaction had just its course over and over again. Good thing, my teeth are already fixed so it's okay to remove them.
Now that I no longer have the inducer of my PLEVA, I am expecting that it won't bother me again. I hope on the 9th month from my last breakout, I'm totally and forever PLEVA free!
Never lose hope! I know we will all get better. Just believe you will be cured and you'll be. Be patient finding what causes it 'coz I know it is triggered by something that you all need to discover.
Will keep everyone posted about my improvement. I hope my experience can somewhat help you Guys to not give up.
:)God bless everyone!
UPDATE: PLEVA no longer bothers me on its 9th month from my 3rd and last outbreak (June 2011). I'm now totally PLEVA-free! God Bless us all.
Do you mind sharing the metals? The reason I ask is that many of us had dental work just before the outbreak....was it the equipment or the metal fillings in our mouth? thanks!!
alice thomas

UK

#778 Jul 1, 2012
Ive had constant nosebleeds all night joint pains and got servere headaches got hospital today at 3. I also had braces bit they were taken out 2 years ago x
Jodi

Saint Paul, MN

#780 Jul 2, 2012
My breakouts began after a waterpark weekend with my kids over Spring Break in 2006. A friend and I used the pools and a hot tub while at the park and woke up the next day with red spots on our skin. While hers went away after a few days, mine persisted and after many doctor visits and a biopsy I was diagnosed with PLEVA. I am of the belief that my outbreak was initally caused by a staph infection from bacteria that may have been present in the hot tub water. However, as most of you know there are no definitive findings as to why anyone contracts PLEVA in the first place.

My treatments over the years have been a combination of Erythromycin (which causes me stomach problems), Methotrexate (which requires frequent blood work because it metabolizes through the liver and depletes vitamins in the system) combined with a topical ointment by prescription, tanning beds, and natural sunlight.

The longest period of time I have gone without a breakout was this past winter/spring from February through early June. I had no breakouts and was not on any medication during this time. I live in the Midwest where the weather is dry/cold during our winters and now I'm beginning to wonder if weather is also a factor for this disease. As of last week with the humid/hot temperatures in my area my PLEVA has returned full force on my arms, legs, and torso.

This disease has caused me a lot of anguish, time, and money trying to combat the symptoms. Not to mention reassuring others who see my skin that what I have is not contagious. I will be visiting the dermatologist again in the next couple of weeks to have her review my latest breakouts and prescribe another round of antibiotics... more co-pays and more expenses for medication.

My symapthies go out to everyone who is dealing with this disease either personally or with someone that you care for- its life altering in many ways that others don't understand.

I'd be very interested to find out if anyone else has found weather to be a factor in making their breakouts better or worse depending on the conditions.

Thanks for providing this forum!

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