researching Pleva

[jeanie]

Hello to all, my name is Lori, I am new to this message board.
I am the mother of a fifteen-year-old daughter that suffers from the skin condition Pleva. I am also doing research for an article I am writing on Pleva.
I am looking for any information from people who suffer with the condition and also experts.
I am very disturbed that so little is known on this condition, and currently there is'nt a cure or any research being done (to my knowledge).
I would appreciate any help I can get, not only for my article, but for my daughter.
Thank you in avance for any help you can provide us.

Happy holidays to all.

Lori
e-mail:aab5@aol.om  

[Val]

Hi Jeanie/Lori,

Welcome to our forum

I'm sorry to say that I have not heard of this before, but am sure that someone here will have. Also I'm sure that we will all dig around to see what info we can find for you.

Sorry to hear that your daughter is suffering so much, at such a tender age. You will find that here, both you and her will get a lot of support.

lol Val

[Nick]

Hi there Lori

A hearty welcome to the forum

It must be terribly distressing for your daughter to have Pleva (aka Pityriasis Lichenoides) , but it certainly sounds like she has a very supportive and caring Mum, which with many skin conditions is a very important thibg to have.

As I understand Pleva it manifests itself a little like chicken pox, causing slightly raised blistery red blemishes on the skin
Picture here

The cause of Pleva has yet to be decided. Some Dermatological groups feel that it may immunologically triggered but as you say, research is not a priority for them. That really doesn;t give much confidence or reassurance does it.

I believe that treatment can be available to help to minimise the Pleva, depending on the severity of the outbreak. Erythromycin can be prescribed to try to help as can as can Vitamin E and bacitracin. The problem seems to be that many pharmaceutical companies do not divert any of theor resources to providing proper relief from it, which doesn;t help your daughter.

I'll make some enquiries to see if there is anything that can be suggested from some of the sites that we are now partnering with. Let's just hope that there is more going on behind the scenes that is not public knowledge yet.

The most important thing is that your daughter is getting the much needed support that is vital for anyone of her age with a skin condition. It can only serve to help her feel an element or normality.

Rest assured we'll gladly do all that we can to help Lori

Do you mid me asking how long your daughter has been diagnosed with Pleva, how severe it is, who has treated her (Dermatologist or fanily doctor) and what medications she has been given for it so far.

Look forward to hearing back from you, take care til then

Nick

[Ami]

Hi Jeanie/Lori Welcome to the Form

[Hydroponic]

Welcome to SkinCell Lori.  It's good to have you along..

As you can tell, Nick will be a good source of information for you and your daughter.  I suffer from psoriasis, and I take advantage of the lighter social aspects of the forum, so you will find all varieties of support here, whether about the conditions, or just to have a chat about whatever comes to mind.  Wish you the best of luck..

- Hydroponic

[jeanie]

Nick,
Thank you for your concern. Ashley was diagnosed last Februry, by a dermatolgist, through a biopsy.
She has tried several antibiotics, and also steroid cream, all with-out any success.
Her breakouts vary in intensity, but when they are going away they also takeout the pigment in the area they occupied. This particuar symptom is odd to Pleva. I'm sure you can imagine the horror for a teen girl. As of yet they have not reached her face, but they seem to be on that path.
Again, thank you for your support and help. I feel if we give voice to this condition, we have a chance at research.

Have a  great holiday!

Lori

[peterb]

Hi Jeannie and welcome to the Forum.

I have a friend who suffers from this condition, there is a good site at http://www.glory-of-the-garden.com/plevinfo.htm with at bottom of page, a few other sites, which you may find useful.

[Elessar]

Hi, Jeannie! Welcome to Skincell.

I've done a little digging and I can't find anything that correlates Pleva to skin depigmentation.. there's several other skin disorders that cause it, but none of the articles I found mention  Pleva except in passing.

I'm not doubting your derm's diagnosis one bit, but can you describe Ashley's symptoms a little more?

[jeanie]

Ashley has had this condition for around 1 1/2 years.
It orgianlly started out as red raised itchy bumps that turned into red scaly lesions.
I thought that mabey she needed to exfoliate her skin better, but that didn't help. When the lesions were going away they turned into white spots, that were later known to be depigmentation.
Last February she was diagnosed with Pleva after undergoing a biopsy. We brought her to another dermatlogist and to her regular Doctor for second opinions.
Although she still has white spots, they confirmed that she will regain the pigment.
It is frustrating to have a condition that is so little known about. I am hoping to bring light to others who have been afflicted by this condition.
Thank you so much for your help and concern. With all of your help we and others may have a chance at research being started.
Have a wonderful holiday.

Lori

[roni]

Hi Jeanie welcome to the forum.

[juliep]

Hi Lori

My psoriasis commenced its life as pityriasis lichenoides chronica (guttate psoriasis) - I was 8 years old and spent 3 months in hospital. Like Ashley I lost melonin where the pustules had been - I went from lots of little red scabs to loads of white patches. When I was 12 the condition changed and became full blown psoriasis. I believe that Pleva and psoriasis are very closely linked - just different forms of the same thing. Mine started following a reaction to rust, made worse by taking penicillin as a treatment.

For those of us with pustular p, Pleva looks very like small individual pustules, particularly those that are deepset.

I'n not saying that Ashley will get psoriasis (I'm sure she won't) but I do think that the link should be researched and that there should be some consitency in the diagnosis of these conditions

[jeanie]

Thanks for your reply. I was beginning to think Ashley had  condition unique to Pleva. Besides you, I have not heard from anyone that lost pigment where the lesion  were.
This is truely frustrating since many people have different variations of the same condition.
I tend to agree with you on the links to Psoriasis and Pleva.
At  another message boad I had a lady tell me that she took her daughter to a nutritionist because her doctors didn't have the answers (how well we know this). She explained that they found that a parisite in her body might be the cause. They have her on herbal medicines, which the mother seems to believe are clearing the Pleva. I am getting in touch with her so I can get more information to pass along.
Have a great holiday!

Lori  

[Nick]

Lori, I found a bit of information regarding the treatment of Pleva using UVA.

Don't know if you have come across this previously ? ? ?

BACKGROUND: Ultraviolet A1 (340-400 nm) was found to be effective in the treatment of cutaneous T-cell-mediated diseases. OBJECTIVE: The purpose of the present study was to assess the efficacy of UVA1 phototherapy for pityriasis lichenoides et varioliformis acuta (PLEVA) and pityriasis lichenoides chronica (PLC). METHODS: Eight patients (3 with PLEVA and 5 with PLC) received 60 J/cm(2) UVA1 daily until remission. Four patients also had lesions inaccessible to UVA1 that were used as control lesions. Immunocytologic studies of skin infiltrates and circulating T cells were done. RESULTS: Six patients showed complete clinical and histologic recovery. Two patients with PLC had a partial improvement. Unirradiated control lesions never improved. Serious short-term adverse effects were not encountered. No effects on circulating lymphocytes were reported. CONCLUSION: UVA1 therapy is an effective and well-tolerated treatment for PLEVA and PLC. The therapeutic activity seems to be related to direct effects on cutaneous inflammatory infiltrates because the lesions in nonexposed cutaneous areas did not respond.

[jeanie]

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  

[electric_ian]

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  

Jeanie as you say that many people have had skin cancer in your family,.HOW COMMON IS THAT ??
is the treatment the cause or will they get that anyway
do you know what I am trying to say...
Maybe the cure is worth a go..
And the Q.. is why or how has so many people in your family have had skin cancer..Is it related?


I hope you find help for your daughter,we are always here for help ,,support . and light hearted relief.
or  even a  a RANT  OR RAVE
IAN

[jeanie]

Ian,
Skin cancer, sun spots, liver spots, etc. are common in my mom's side of the family. Most of the older family members have liver spots, dark pigment spots and or skin cancer removed.
Although Ahsley is not fair skinned, I continue to worry about the long term damage. I managed a well known cosmetic company for years, so I see  what the sun can do to the skin, especially as we age.
I don't know the answers to the UVA treatments, but in  the tanning beds your body is exposed to tha aging rays(UVA).
Thanks for your post. Mabey I should do research into Tanning beds?
Thanks again!

Lori    

[buzzword]

Hi,

I'm new to the forum and have recently been diagnosed with PLEVA, the dermatologist was really blase about the whole thing and assured me that it would only last a year or so. I'm in line to have the UV treatments so will post again when I know how this has worked but I was wondering if you had any luck with the nutritionist? There's so little out there about the condition, I would be really interested to find out more.

 

[peterb]

 :hi:buzzword
A warm welcome to the forum,  have a look at this which I posted for another member, gives a thorough insite with loads of links to Pleva.  http://www.glory-of-the-garden.com/plevinfo.htm

Let us know how you get on with the UV treatment.

 

[Gobe]

 

Welcome to Skincell Buzzword

 

[GuzziHeroV50]

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