Persistant Erythema Multiforme!

[sylance9]

Ok so heres my backround.  I started getting these round itchy spots on both elbows about 6 years ago.  There would only be two sites, one on each elbow (super extremely itchy).  They would recur every so often.  In about Febuary of 2012 I started to get these itchy spots on my forearms and hands.   Again they would recurr only every so often.  In August of 2012 I started getting those same spots but they would then turn into extremely large target lesions that would start out itchy, then get extremely painful.  ( Im talking I cant shampoo my hair or barely drive.)

After august, the condition has not stopped.   The dermatologists say its Erythema Multiforme (it looks absolutely terrible) The ONLY thing that makes it go away now is prednisone.  Once the prednisone dose is done, about 5 days later, I will start getting spots again.   Ive been to 4 dermatologists.  I dont take any medications ( I havent had a tylenol or ibuprofin etc in over two months thinking it might be medication), the only medicine ive had is what my derma has given me.  They have done blood tests that show I do not have HSV, punch biopsies that show I have an auto immune response going on, but basically have absolutely no clue what is causing it, and have made it clear they dont intend to find out but want to medicate me to supress it.  Ive tried every over the counter cream and perscription cream known to man, Valtrex, Dapsone, Doxycycline etc nothing works.  Only the prednisone which my current derma has decided I shouldnt have anymore (which I completely understand because I dont want to develop Cushings)

I am at my wits end here, Im a nurse in a Hospice setting so I am exposed to family members a lot, and they see me and think I have some sort of infectious disease.  I have to wear long sleeves under my scrubs (its 90 degrees here!) due to all the current red lesions and the dark spots under it from my last flares.  I cant wear anything that shows skin or people stare at me or ask questions which is terribly embarrasing.    It seems to be getting worse now, and is on my legs now, thighs, back, and feet.  Wearing gloves (which ive tried every different type to make sure it wasnt an allergy to the type of glove being used, is terrible and in some cases I end up ripping skin off when taking them off.  I develop skin tears on my elbows from pushing myself out of chairs.  I wake up in sheet dreanching sweats itching terribly.

I need help.  My question is, are there any other causes to this, and shouldnt they be finding out the cause to treat it that way rather then supress it?  Should I be seeing a regular doctor to find out whats causing it rather then a dermatologist?  

MY last derma basically said she had no idea what to do with me becuase normally people dont have it persistantly like i do (not one break since august except when on prednisone), and her pts normally respond to valtrex and had no idea what to do beyond that.  She just tried me on dapsone and im pretty sure it actually made it worse, if thats even possible.  I asked her about finding out whats causing it, and she said "it could be anything, and we should work on supressing it rather then trying to find a needle in a haystack".  The 3 other dermas before her basically were just as flammoxed as she was and had no idea what to do with me.

Thanks in advance and sorry for the lengthy post but at this point Im desperate.  

[maatson]

J Drugs Dermatol. 2003 Jan;2(1):40-4.
Thalidomide as elective treatment in persistent erythema multiforme; report of two cases.
Conejo-Mir JS, del Canto S, Muñoz MA, Rodríguez-Freire L, Serrano A, Hernandez C, Pulpillo A.
Source
Department of Dermatology, Virgen del Rocio University Hospital, Seville, Spain. ***@****-andalucia.es

This is just an information
.
Obviously being a potential teratogen monitoring by a specialist in department of dermatology is absolutely essential.
Also, assuming that the diagnosis is confirmed by the specialist.
Regards and best wishes.

[Gracevd70]

I know this is old post but I looked this up saw a picture and I think you need a better Derm.

[sylance9]

I actually ended up being studied at the NIH and Yale after years of searching it ended up being a  genetic mutation that caused an allergic reaction to the new mutation.  It was a first ever instance of it and ended up in medical journals.  

[Gracevd70]

Wow, did they manage to cure you?

[purple1234567]

Wow, that's amazing- thank you for coming back and sharing your update.  

[Satya92]

Hello sylance9
Did you get treatment? My daughter also suffering