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Subject:
From:
Mike Rose <[log in to unmask]>
Date:
Thu, 19 Mar 1998 14:44:13 -0800
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<<Disclaimer: Verify this information before applying it to your situation.>>

I have been taking medication for DH since April 1970. I was first taking
Dapsone, 25mg tabs, two tabs, twice a day. After about four years, I was
switched to Sulfapyridine, 50mg tabs, three twice a day. The switch was due
to some changes in my liver function tests. BTW, my dermatologist follows me
closely with the liver functions. About eight years ago, I was switched back
to Dapsone because the Sulfapyridine was no longer available. I am currently
taking three 25mg tabs once a day. This is since going totally gluten-free.
Im can't seem to get any lower than that without a flareup. From time to
time I have had to take Azulfadine when the Air Force pharmacy ran out of
Sulfapyridine. The Azulfadine turned my urine very orange and didn't work
nearly as well, even though I was taking at least eight 50mg tabs a day. The
bottom line is, Dapsone works best, but liver functions must be followed
closely.
***
I am a self-diagnosed sufferer of dh.  My celiac status is diagnosed
clinically by a physician.  I am a nurse and am very hesitant about using
dapsone or any other steroid preparation so I have been self-treating,
(a no-no but it has been better so far than the side effects of the
Steroids). I have found that over-the-counter antihistamine preparations
that are gluten-free keep the itching to a tolerable level. I make sure I
keep my fingernails trimmed so I can't "claw" myself and I make sure I keep
my self clean so anything I break down and scratch doesn't get infected.  I
guess its not the best solution but its better for me than the side effects
of steoids.  If the symptoms get really bad as they have once or twice--and
those seemed to be linked to accidental gluten ingestion--I contact my
doctor and he prescribes a medrol dose-pak which gets the symptoms back to
a level I can live with---if your doctor friend has a better solution
without side-effects tell him to share.---Itching in texas
***
I do not use Dapzone because of the nasty side effects, so I was prescribed
a combination of Minocycline 100mg twice daily and (B3) Niacinimide 500mg
once daily. This was prescribed for my Dermatitis Herpetiformis. It really
seems to help. I only take it now when I know I have ingested gluten. I am
gluten free but occasionally I will eat some without knowledge and then
need this medication to ease the pain. I hope this helps with your
research. If you need more information please let me know.
I have been using a product called Fluocinonide Cream manufactured by TARO
Pharmaceuticals Inc. of Bramalea, Ontario, Canada.
I only apply when DH blisters appear, and get immediate relief. I am staying
as clear of gluten as I possibly can. Chose not to go the dapsone route.
Dermatologist diagnosed DH and prescribed this product for me. A 15 gram
tube lasts about two or more months. Don't seem to have too much of a
problem when staying clear of gluten.
***
I saw your post regarding DH medication.  From time to time depending on
what I eat I get DH,  the only medication I put on it is:  "Polisporyn
Antibacterial" over the counter medication (I usually buy the Life Brand
from Shoppers Drug Mart).  It does work much better than the other
medication I have used.
Atarax works good but causes drowiness (it will just about nock me out)
however Claritin is a wonder drug for me it has no ill effects and
completly releaves the itching.ws
***
I have had DH for over 30 years. The only other medications I know of are
topical ointments. For flair-ups, my doctor prescribed a mixture of Psorcon
ointment/Bactroban Ointment.
***
DH patients not only need to avoid gluten but also iodine. Before the
immunofluorescence biopsy examination, an iodine patch was used to induce
blistering of the skin to diagnose DH. My dermatologist warns against
ingesting or using iodine. Foods such as sea fish, sea salt, iodized salt,
egg yolks, many others should be avoided. Also, many of the multiple
vitamins contain iodine and should be avoided.
****
Tell your friend that dapsone is the miracle drug that is the cure for
Leprosy. Its use by DH patients does not cure. It just masks the problem.
It is a sulfa drug and one should make sure that they are not allergic to
sulfa drugs. There are many side affects that go along with the use of
dapsone. Make sure your friend gets all of the information first.
Some of the latest literature states that once on the gluten free diet, the
average length of time for the blistering of the skin to clear up is 7
years. However, the length of time may vary between several weeks up to 16
years.
I have found that any kind of stress on the system (a cold, flu, cut ET.)
Can cause a flair-up.
***
    I have taken Sulfapyridine as an alternative to Dapsone for the last
20+ years. My normal dose is 3 grams/day.  I was switched to Sulfapyridine
after 6-7 years on Dapsone and a resulting severe case of hemolytic anemia.
 I have had no known negative side effects, and great control of my DH while
taking Sulfapyridine.  About 4 years ago the US manufacturer of the drug
Eli Lilly stopped its production.  Shortly thereafter another company
Jacobus Pharmaceuticals in New Jersey started production and is currently
in trials with the FDA. During this time they have provided the drug to me
through my dermatologist at no cost.
 I have routine blood tests done every 4-6 months which have always been
within acceptable ranges.

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