researching Pleva

[Nick]

Hi to both Josie and to Sam

Josiefer, I would certainly agree that the links between stress and skin are very deeply entwined. I know from first hand experience and have even managed to document my turnaround time to be three days - get stressed and three days later ..... Mega Flare-Up


Sam - That's great news that you have had remission for so long And you're right ! There is always hope

[Shadowmaiden]

 :)Hi Jeanie! Welcome to the Forum!

When I was researching one of my many skin problems just last month, I thought I in fact had PLEVA. My lesions though never became plaque-like after they healed, and were primarliy limited to my legs only.In some spots I still have faint red dots, they seem to take a long time to fade, like a deep pimple spot. I have surmized that I have an unusual form of folliculitis called Pityrosporum folliculitis. I came to this presumption, as a predisposing factor to the condition is a superficial skin fungus called tinea versicolor(which I have).
Last year and the year before however, at around the same time I had developed a strange rash on my arms only- from my bra strap to my wrists. It looked like someone took a red marker and made little dots all over me! After about 6-7 days they dried up and began to fade, they were probably all gone within 2 weeks. Weird Stuff!
Anyway, I had a website written down in my journal for PLEVA, maybe you'll want to check it out for some info-
www.myskin.4t.com
Good Luck and Be Well!
Shadowmaiden

[misplaced]

Hi Lori!  

I came down with PLEVA when i was 17, and it lasted approximately a year.  My rashes were painless, and did not itch.  After about a year, I would get a spot here or there ocassionally, but even this stopped within a couple years.  I am now 22.  During that first year, I tried antibiotics, without any positive results.  I did not try the light treatment, because I came down with PLEVA in the middle of a Florida summer; I was getting plenty of sunlight during my daily activities.  I have darker skin, so I experienced the light marks in the areas where the PLEVA spots had disappeared.  Picking at the rashes when they are partially healed makes the loss of pigmentation worse.  Though the PLEVA went all over my arms, legs, and trunk, eventually covering my neck, it did not affect my face at all.  My marks and loss of pigmentation faded...the white spots all disappeared, though I do have some lightly visible marks at the places I would pick at the scabs...its tempting bc they make them look better in the short run, but are worse to do in the long run.  

I found the posting  describing the mechanisms of treatments listed above interesting...I think you should definitely explore the idea of this being an autoimmune reaction, linked to T-cells.  T-cells are agents of your immune system that kill certain type of infected body cells, such as those infected by viruses.  Sometimes they can cause responses that hurt us if they lose the ability to discern between good cells and bad cells.  The part that I find curious is that this type of autoimmune response is not necessarily chronic.  It makes me wonder what sets it off, and what causes the resolution of the disease.  Since I was I entered college (age 18), I noticed that I rarely get viral diseases, such as a common cold...usually its only when I'm exposed for long periods by someone I'm in close contact with.  Has anyone else with PLEVA noticed they are less susceptible to the common cold, or is it just me?  It could just be me.      

Incidently, my identical twin sister never came down with PLEVA, even when we would accidently share razors before I knew I had it.  This shows that if PLEVA is genetically based, or prompted by a blood borne pathogen, it must be the result of multiple factors.  If it was prompted by a blood borne pathogen, perhaps people with PLEVA have a stronger reaction to it than others do.  My sister is also much more susceptible to viral infections than I am.  Perhaps lifestyle differences, such as inability to handle stress as well as I do, weaken her immune system, and thus protected her from PLEVA.    

There are so many questions, and so little time...sorry for rambling


       

[Gobe]

 

Welcome to Skincell Misplaced!

 

[cwlucy]

Hi ,

I just wanted to let you know I have had PLEVA for about 3 years, and I also have the depigmentation.  There are several treatments for PLEVA, I have tried them all, oral steroids, steroid cream, and the uv light.  When the PLEVA is at its worst the steroid cream works pretty good, but the uv light seems to keep the recurrances down.  You do not have to stay an extended period of time to get some results.  I have done alot of research, so if you have any questions, just ask, I will try my best to help.

[Nick]

Hi there cwlucy and misplaced,

Welcome to you both.

That's very interesting about the twins factor. As twins should have the same genetic make-up you would expect (? ? ) both to be afflicted, but as you said, it must be a combination of factors then that starts the PLEVA reaction in the first place. It kinda makes you feel like at some point in your life you were in the wrong place at the wrong time

[santa137]

Hello

[Gobe]

 

Welcome to Skincell Santa137!

May I ask what is the nature of your skin condition?

 

[santa137]

Hello,
My name is David and came down with Pleva a little over a year ago. It all started with a red dot that seemed to grow by the day on my stomach. Then one by one they started to form from shoulders to feet. some small but some were very deep and left terriable scars. the one on my side lasted about 7 months and was about 3 inches long. It was not painful but looked liked it hurt. I was probaly one of the worst cases seen in a long time. I still have occasianal bumps but nothing to bad.

My question is that anyone who has PLEVA were your sores bigger then others and how long would it take for the wound to appear and then disapper. I have about 9-10 scars that will never go away. I tried Erithimicen but it didnt do anything and the PUVA treament I didnt even want to take the chance. What can help the brow dark spots that are left behind? It is defiantly getting better and just wanted to say if you have it hang in there it only temporary. You will also see a change in your lifestyle and how you view others with conditions.. Good luck to all,,if you have any questions Ill be happy to help.....

[Shadowmaiden]

Hi Santa! Welcome to Skincell!

You say you PLEVA leaves pigmented spots, whereas most of the others have a lack of pigmentation. Interesting.

I myself have Follicular Eczema, which is mostly on my arms, stomach and legs. When I have a flare up, the blisters dry up and leave dark brown spots also. I find that mine fade with time, but it sure takes a while. I just keep applying moisturizer.

Also- many of you say the PLEVA leaves a white depigmented mark behind, My Pityriasis Versicolor causes these depigmented spots on me, but they are mostly noticeable in the summer when I get a tan. I have NO  IDEA if there are any common traits between the two disorders, other than them being labeled as "pityriasis ____", but if I use Lotrimin lotion the spots regain color within two months.

I understand how distressing it can be, last year I was in a wedding party, and had to wear a strapless dress. 3 weeks before the event, i had a huge white splotch across the tops of my shoulders . Luckily I cleared it up with the cream in time, but what a nightmare. I wish you all luck!

Be Well
Shadowmaiden  

[deirdre]

Are your brownish spots maybe... purplis (I don't know what your skin tonation is: I am extremely fair)? If so, what you describe as Pleva siunds to me a bit like Lichen Planus. Was it diagnosed by a dermatologist? For solid medical info and LP-related links go to www.tambcd.edu/lichen.

[santa137]

I have average skin, and tes the spots that are left after the scab and skin dry up are sometimes a lite tan spot which fade after many months. I was told that I have Pleva from a Derm. but I may have been misdiognosed. I some time (very rarly) get sores in my mouth and on my face. If on my face they are near my eye or lip...once in a while on my neck. The majority of the spots accour on my arms ,up legs, and my feet sometimes. Most are small and are gone in a few weeks with little to no marks, But when I had my first out break IT WAS BAD,   big deep scabs from neck to toe..and one monster one on my side which left a scar that I will have for ever ....I am 29 years old and feel great the only thing is this PLEVA stuff.. I dont go to the dermatoligst because they dont do anything but say "Well it looks like its getting better" They dont seem to know to much about it..I went to one of the top dermatoligists at JAckson MEmorial Hospital in Miami and he said I should have PUVA treatment. I did not do it.. Does anyone think I should take the erithiniacin..did it stop your out breaks ,,or has anyone done the Puva treatment and was it a cure..I am 50X better then I was a 1 1/2 ago but what can I do to wipe it out for good? Your help is greatly appreciated...

[deirdre]

I am not a derm so cannot say... but there are similiarities in what you describe to what I know as Lichen Planus. Do ask your derm about that possability. LP does affact tghe mouth, for example (ask your dentist about that). Oral Lichen Planus can become pre-cancerous (I do not want to sacre you, but this is a real concern) so do please get a diagnosis. There are lots of (scary) pix online re: LP... don't freak out but if you think the Pleva diagnosis is off, consider LP.  

[manders7h]

Hi my name is A*manda and I am fifteen just like your daughter. Believe it or not my PLEVA used to do the same thing and I had white spots. It was embarassing especially in PE. Eventually it stopped and the spots go away normally although they take forever. I hear about a lot of teens getting this problem and I wonder if there is a connection there because mine started the summer I got my 1st period. Well anyway four years later now I'm a sophmore and suprise suprise I still have PLEVA all over my body. The sun definitly helps but I want something more. Post any information you find about treatment so I can get help too. I would greatly appreciate it.
A*manda
 

[Selena]

Hi,

I was wondering if you had found any more research on this.  You make some very good points.  I was recently diagnozed with Erythema Multiforme Minor although I was at the derm today and the head doctor still thinks it could be PLEVA.  The biopsy leans towards EM but the rash does not fit the partiuclars of EM which is why on medical rounds 15 doctors voted it was PLEVA.  My derm thinks it is EM and is treating me for that with prednisone and betaderm.  It has been a month and evertything is drying up well although my nexk is still really bad.  Is it commom for biopsies ot have additional diagnoses?

[gracie4prez]

Hello all,

Last August, as a 30 year old, I noticed I was developing a rash that didn't itch and because it hadn't spread too far (on the inner legs and arms) I didn't think too much about it, applied cortisone to see if that would help.  In October, I went down to Mexico for vacation and the combination of heat, humidity and sun actually made it much worse.  It still didn't itch but the blisters expanded in size and became a deep red color.  After returning home, it improved slightly and I finally went to a dermatologist.  After my doctor saw me (along with 2 others), they had a feeling it was PLEVA and performed a biopsy which confirmed their beliefs.  I was prescribed Tetracycline and a steroidal cream to clear it up.  It helped slightly, got rid of most of the rash but in Jan., it came back.  It's not in a severe form but it definitely makes me very self-concious.  I've researched PLEVA extensively online and although I'm relieved to see some articles indicating it will clear up within a year or so, I'm also just as nervous to see that there could be a correlation between PLEVA and a more significant disorders/diseases.  There just hasn't been much research on the disorder and it's not comforting to go to the dermatologist and hear that it "should" go away, and that the causes are unknown.  I may look into trying the UV treatment but that also makes me nervous because of my reaction to the sun in Oct.  

This forum seems to be very supportive, and being in the company of others that have been affected by this rare condition is certainly reassuring.  

[Gobe]

 

Welcome to Skincell Gracie!

 

[Nick]

Hiya Gracie,

I'm so pleased that you feel a little bit reassured. Pleva is not a pleasant condition to have, but take heart - you are never far from fellow sufferers or friends who understand what you are going through when you are in SkinCell

[hemant]

Hi Lori,

I have seen your postings in skincell.org, on your daughters skin condition called PLEVA.

I suggest you to carry out a Food allergy and a Food intolerance test on your daughter and you will be in a better position to help and treat your daughter.

regards ... hemant

[samsmom]

Hi Lori,
My daughter was just diagnosed with Pityriasis Lichenoides Chronica. She is also 15 yrs old and what we have found strange was that she has had alot of sore throats with no diagnosis as to why. My husband also has Ankylosing Spondylitis associated with psoriasis. Is there a corrulation between all of these or just a coincedence? I was wondering if you knew or anyone else knows of any studies being done on either of these conditions?

Lisa