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Hello to all,

    I would like to thank everyone who responded to my post about
"Eliminating Dapsone". The summary of the people who replied follows:

    20 replies from people have had DH from less than one year, to as
much as 38 years. All but two have been on dapsone before going GF, with
doses ranging from 100 mg/day to 250 mg/day. The amount of time that
these folks have now been on a GF diet varied from 3 months to 18 years.
One person said he has been "on and off the gf diet" for years, and has
not been able to cut down the dapsone, let alone eliminate it. That is
understandable since gluten is the source of our problem, and no amount
is acceptable to our system.

    The next figures are very interesting: the amount of time being GF
before eliminating or reducing their dapsone dosages ranged from 2-3
weeks(!) to 3 years. Two people stopped taking dapsone in 3 months , one
in 6 months and two in 2 years. The rest of the group has not stopped
the dapsone, but has cut the dose down significantly: 4 people take
25 mg/day, 4 take 50 mg/day, one person one tablet every other day, and
one person takes only 12.5 mg three times a week! One said that it
typically "takes 18 months for the IgA deposits to dissipate from under
the skin".

    Two people use creams such as "MSM Lotion", "TriMedica" a sulfa-
based cream, or other unnamed creams to help with occasional flare-ups
after stopping dapsone. Flare-ups were cited as being caused by both
accidental gluten intake and  severe stress. The two people who never
went on dapsone used cream to help control their itching: one person had
a mild case of DH and the creams worked well. The other person used
*Triamcenilone(sp?)*cream for 5 years and had very serious side effects
(Kidney damage) as a result. She said she nearly died. She got the
*right* doctor just in time, and is now gluten free and off the meds.

    Several people cautioned that when trying to see if you still need
dapsone, GRADUALLY reduce the dosage, as it may be harmful to the body
to abruptly stop taking the drug. "Oh, be careful.  Dapsone is a steroid
and you get in big trouble real quick if you just stop them cold turkey.
You should coordinate it with your doctor and taper off in progressively
smaller doses and less frequent intervals until you are down to 1 X day
then not at all, if you can tolerate it. It really can cause some life
threatening problems if you take them one day and the next day you are
not." Some cut the dose by a third or half, to see how it goes for a
while, then adjusted the dose again. One person's formula for success
was:
    1. How long have you been taking dapsone to control DH?
         13 MONTHS diminishing dose over that time:
          3 months 25mgs twice daily  (50mgs day)
          6 months 25mgs once daily   (25mgs day)
          3 months 12.5 mgs    "       "    (12.5 mgs day)
          1 month   12.5mgs  X 3 times per week

    I feel very encouraged by the successes of so many, and the support
by all. You are great, caring people. Thank you for sharing your
knowledge and personal experiences so that all may benefit.

Bill in Delaware