researching Pleva

[hatfield]

Hello to all!!!

Just researching PLEVA and came across this site.  My daughter has been diagnosed with PLEVA 2 years ago she is now 9.  The pediatrician did not know what was on my daughters skin so he sent us to a Dermatologist; she then did a biopsy, which came back as PLEVA.  We got the same story about how rare this disease is; that there is no research done.  Since then I have tried to keep my eyes and ears open for some kind of clue to what might help because we have used the steroid creams, the wheat baths and so on nothing worked.  Then I heard on the radio from a doctor discussing natural remedies she mentioned NEEM, which is a plant from India.  This NEEM is available as a cream and many other forms such as oils, pills, shampoos and so on.  The doctor said was very affective on Psoriasis and many other skin conditions.  She also discussed that for warts the cream was affective but the patient would have to take the pill version to clear out the viral effects.  So to make a long story short, I have been applying the NEEM cream to my daughters infected areas and so far so good.  The other steroid creams didn’t do any good but in two weeks of using this NEEM cream you can see a noticeable difference especially in the areas around the knees where the “old” PLEVA has discolored (turned white) and has formed bumps.  I will continue to use this cream and will start to use the pill form to see if this has any improved effect.

[GuzziHeroV50]

Im not able to help you (I have a totally different condition, but welcome to the forum, and Im sure someone will be able to advise you soon

[jennybumps76]

Hi Lori/Jeanie! I am 27 and have suffered with pleva since 2/03. I too had some biopsies done and the white spots you mentioned.  I was told today that i have a psuedo-lymphoma, whatever that is. I know that this is not easy for any of us, but by exchanging battle stories we can hopefully help eachother in some way.  The MD's say that it all started with an adverse drug reaction.  I got second and third opinions and finally last week had 2 unbelievable blisters develop on my left leg.  They biopsied those and that is when they told me about the pseudo-lymphoma.  I wish that none of us had to get this or that I could say I had a cure, but I have faith in you and your research, girls!  If there is anything I could do to help just let me know.  Good luck.
Jen

[Nick]

Hi there Buzzword

the dermatologist was really blase about the whole thing and assured me that it would only last a year or so

Oh well that makes it alright to suffer then ? ?
I bet that Derm wouldn't dare say that if it was him/her suffering from it  
I'm pleased to say that you certainly wouldn't get that sort of reply from us here
Good luck with the Pleva, Buzz.

[kneecapper]

Nick,
Thanks for the information.
Ashleys Doctor provided this infomtion also, yet she also reminded me that such treatments could cause skin cancer in the future.
Although I have not discounted this form of treatment, I have a growing concern about skin cancer, since many in my family had skin cancer removed in their later years.
A few other people  that I have spoken to, that sffer from Pleva, also have tried this form of treatment, with mixed reviews.
Thanks again for the great information!
Lori  

Hi Lori,

a belated welcome to the Forum. I have just been reading the comments about your daughter and your concern about trying this treatment because of possible skin cancer.

I still think that even if there is a slight risk of skin cancer in the future that the treatment might be worth a go. The reason that I say this is that these days there is a lot more focus on skin cancer and if your daughter is checked once a year then any suspicious lesions can be removed before they have the opportunity to spread.

My husband had a basal cell carcinoma removed from his nose about 3 years ago and he has not had any other problems. He continues to go to the skin specialist for check ups and he does have skin cancers removed on those visits. Most of these skin cancers have not turned nasty.

If you and your daughter go through the treatment and then she has yearly checkups then the risk of having a fatal melanoma will be minimized.

Maggie

[kneecapper]

Hi Lori/Jeanie! I am 27 and have suffered with pleva since 2/03. I too had some biopsies done and the white spots you mentioned.  I was told today that i have a psuedo-lymphoma, whatever that is. I know that this is not easy for any of us, but by exchanging battle stories we can hopefully help eachother in some way.  The MD's say that it all started with an adverse drug reaction.  I got second and third opinions and finally last week had 2 unbelievable blisters develop on my left leg.  They biopsied those and that is when they told me about the pseudo-lymphoma.  I wish that none of us had to get this or that I could say I had a cure, but I have faith in you and your research, girls!  If there is anything I could do to help just let me know.  Good luck.
Jen

  Jennybumps and welcome to SkinCell. This is really a great and supportive group for people with skin problems.

Maggie

[GuzziHeroV50]

Welcome to the forum Jenny!

[kneecapper]

Hello to all!!!

Just researching PLEVA and came across this site.  My daughter has been diagnosed with PLEVA 2 years ago she is now 9.  The pediatrician did not know what was on my daughters skin so he sent us to a Dermatologist; she then did a biopsy, which came back as PLEVA.  We got the same story about how rare this disease is; that there is no research done.  Since then I have tried to keep my eyes and ears open for some kind of clue to what might help because we have used the steroid creams, the wheat baths and so on nothing worked.  Then I heard on the radio from a doctor discussing natural remedies she mentioned NEEM, which is a plant from India.  This NEEM is available as a cream and many other forms such as oils, pills, shampoos and so on.  The doctor said was very affective on Psoriasis and many other skin conditions.  She also discussed that for warts the cream was affective but the patient would have to take the pill version to clear out the viral effects.  So to make a long story short, I have been applying the NEEM cream to my daughters infected areas and so far so good.  The other steroid creams didn’t do any good but in two weeks of using this NEEM cream you can see a noticeable difference especially in the areas around the knees where the “old” PLEVA has discolored (turned white) and has formed bumps.  I will continue to use this cream and will start to use the pill form to see if this has any improved effect.

  Hatfield

welcome to Skincell. I am sorry to hear how your little daughter has such a nasty skin complaint. I hope that she will continue to be cured with this NEEM cream.

Maggie

[Val]

Buzzword,

Sorry it's a late, but welcome to our Skincell cyber family.

I wish someone would teach these derms a little sensitivity towards their patients.  

As Nick said you won't get that sort of reaction here.

Looking forward to reading more posts from you.




Val

[Val]

  Hatfield,

Welcome to the Skincell cyber family.

Sorry to hear that your little girl has Pleva.

I know it's really hard to see our children suffering and do so hope this cream continues to help her.

Please know that we are always here to listen and support as much as possible.

Also please keep us updated on her progress.



Val

[Val]

Jenny,

Again sorry for the late welcome to the Skincell cyber family.

You are so right, it is a big help to have somewhere to come and share our skin problems with other sufferer's. We all have different type's of skin problem's yet we all have the same or similar worries, and being able to talk  about them is a big help I find.

Looking forward to seeing you around all the boards.




Val
 

[deirdre]

Welcome to SkinCell.

I'm sure you've already been advised that your daughter should avoid exposure to sun until the pigmentation resolves... of course dermatologists are happy to have any reason to advise avoidance of direct sunlight.

Fifteen is such aself-conscious age. Stress contributes to many skin conditions, and I would imagine that dealing with Pleva would be extremely stressful for Ashley. You may want to work on stress-management with your daughter... assuming she's willing to take advice likethat from her mum.

If she doesn't like explaining the Pleva to people who notice the lesions and depigmented areas, you may be able to have some fun helping her put together a wardrobe that hides the affected areas in a way that her peers will perceive as very cool.

Good luck!

[josiefer]

yea i noticed that this message was first posted over a year ago, but i figured it'd be worth a try posting a reply anyway.  i was diagnosed w/ pleva when i was 9, and of course they said it would go away within a few years, but it's been a lot longer than that.  every now and then i get really interested in researching it.  i think i have a less severe case of it, but my skin's been getting better since i started using this over-the-counter lotion.  i too am very hesitant on the uva treatment.  after all, people who go to tanning salons are told to beware of the uv rays.  i actually didn't have a super experience with a tanning salon.  if you want to know more, i could email you or something.  i'd like to read about how everyone's skin is doing.  happy holidays!

[lurker]

josiefer,

  As you can see from the latest posts on this thread, it was still alive and well as of Oct. of this year.  Also, since new members such as yourself come in all the time, threads that are "old" on the forum are certainly "new" to you

  If you wish, you can click "start a new topic" and then you can have your very own thread  

  There are others with better info on pleva who will come along shortly.

  Welcome to SkinCell!  May your stay be helpful and humorous.

 - lurker

[Fishs]

 

 Hi There Josie..

Welcome along to the forum.

Yes Lurker is right here .. No problem with bringing up an old dormant thread . If the topic is of interest to you then feel free and folk will respond ..

Like Lurker, I am also not up with  Pleva . I am a   sufferer , but we have members here who will help and support you ..
They will come along when the spot the post ..

Personally,  I am not in favour  UVA or Sunbed  treatment .. I believe there is far too much risk .. Others I am sure will relay their thoughts etc  so feel free to ask questions..

Fish

[Monika]

Hi Josie!  

I'm still learning about Pleva, through what I read from the members who have it.

I have Eczema.

[josiefer]

wow, the more i read on this forum, the more i love it.  i know soo little about this condition that i just want to do my own little survey.  i just noticed that deirdre mentioned that stress contributes to many skin conditions.  that's been my latest conclusion, that my mix of skin probs is caused by stress.  when i'm stressed it gets worse.  was anyone here going through a stressful time when he/she was diagnosed?  i tend to wear clothes that cover up the majority of it, since it's mostly on my arms and legs.  i don't know if this is a personal question, but does pleva nornally effect everywhere?  okay that's it for now.  thanks for the warm welcome everyone!  peace!

[Tiny_Mo]

 

Welcome to the Skincell Forum

[Val]

 :hi:Josie,

Welcome to our SkinCell cyber family.

I only know what I have read about PLEVA as I don't have it myself, I have a form of psoriasis on my hands and feet.

This link below I have found very useful, I don't know if you've seen it or not but it does have lot's of info on PLEVA.

http://www.dermnetnz.org/dna.pitlic/pitlic.html

I hope you will join in with us around all the boards, and look forward to reading many of your posts.


Val

[samadams]

Hello all.  I was laying in bed tonight and had a sudden urge to do some research on PLEVA.  I was diagnosed with it when i was 14 through a biopsy.  I have read the many comments in this forum and will have to admit, i went through the UVA therapy.  I started out spending 3 minutes in a box of light as i called it at the time.  Each visit would mean more time in the "box"  I believe the incriments were 1 minute additional per day.  I went through this treatment for 3 months (if i am not mistaken) as well as exposure to natural sunlight (as it was the summer months) and am happy to say that my skin has cleared up.  I do have 1 or 2 small spots now and have since the diagnosis, but fortunately they are just under my waist so they are not often noticed.  Most people ask if it is a birth mark or something similar to this, so i live a completely normal life.  I tired the creams, the pills, etc.  but the UVA therapy definitely proved magic for me.  Not to mention the tan that i had for that summer.  I, like most of you, wish there was more research and more info that Dr.s could give patients who are diagnosed with this.  This was 10 years ago and the past decade has been 100% NORMAL.  There is hope.