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I am new to this group, and since I first found it, I've been absorbing all
of the information I can about DH.  My situation is much like so many here in
that I am six months suffering and five doctors along -- without any real
diagnosis yet. (This last week a dermatologist begrudgingly allowed the
resident to do a skin biopsy on me; I should know the results in a few days.)
 
So far all doctors have been treating me for exzema (my original assumption,
since I've had it on and off all my life.)  It is very hard to have them
accept my subjective knowledge that this pain and itching is very, very
different from any exzema outbreak I've ever experienced -- even harder when
the small blisters are camoflauged by the inflamed redness of my skin. (It
had been pretty severe for a few weeks there!)  I've taken it on myself to
start a GF diet anyway (and since the corticosteroids have not affected the
blistering or itching.)   It has taken me a while -- and a lot of reading --
to get to the point where I can say I am really GF now.  The itching and the
blisters are still miserable, though.
 
I have some questions that I couldn't get answered in all my searches.  I
hope I am not repeating old stuff for you all.
 
First, very simply, does anyone know of a support group, or an M.D. -- or a
list of M.D.'s in Hawai'i who are working with or understanding DH??  I am in
Honolulu (island of O'ahu.)  I'm not terribly trusting of my present
dermatologist, and I have some serious decisions to make about treatment.
 
My second question is regarding treatment.  I would like to know more about
others' reactions/feelings about Dapsone.  I am uncomfortable with all I
read.  I had hepititis as a child and my father had porphyria, so I wonder if
I might even be at risk on dapsone.  Has anyone treated their DH with diet
only?  How long does that take?  What kind of alternatives are there for the
itching especially?  If I do take dapsone, can I take it on and off -- just
for the times that are most difficult? (Has anyone done that?)
 
Thanks for any and all help!!
 
Sus Shawhan         \      Kulia i ka lokahi i ke ola.
Honolulu, Hawai'i    \        Strive for harmony in life.