As with celiac disease, the best and only known, side-affect free, treatment for dermatitis herpetiformis (DH) is a life-long adherence to the gluten-free diet. See How is Celiac Disease Treated?, Basic Diet Choices, and Grains and Flours to better understand this specialized diet.
In some cases, the monitoring physician may prescribe Dapsone for the treatment of DH. Here is a recounting of one CSA member's experience with this medication.
By: Ben Crouse, MD
CSA Lifeline, Summer 2001
Dapsone is the usual and main medication for Dermatitis herpetiformis (DH), the skin condition related to Celiac Sprue. Unfortunately, Dapsone is not an innocuous drug. I have had DH several years. I took the nasty drug at first and was mighty glad to get it, 'cause it works. Nothing else really does. But no one would want to take it forever. It ALWAYS, in ALL people, causes significant damage to the red blood cells, producing hemolytic anemia, which in most cases amounts to about 2 grams Hemoglobin. An otherwise healthy young person can tolerate that, but it tends to lead to chronic fatigue. In addition it often causes muscle weakness and rarely, peripheral neuropathy/neuritis, manifested again by muscle fatigue, and sometimes sharp tingling "electrical feeling" pains in the extremities. Most people think Vitamin E, in a dose of 800 mg a day, partially reduces at least the neurologic side effects without reducing the effect you want. It is hard to prove.
I took it 2½ years, and tapered the dose over the last 3 months, starting with 200 mg a day, finally only 25 mg a day, then quit. The DH immediately got worse whenever I tried to reduce the dose, until the end of the second full year, then less so. It did not return when I finally stopped Dapsone, except when I fail to be entirely gluten-free. The treatment must involve total avoidance of gluten. And even now, on the rare occasion when I accidentally have a small exposure to oral gluten, about 12 to 24 hours later, I will get a few of the terrible tiny blisters, but they quickly go away if there is no more gluten. I do apply topical cortisone (triamcinolone 0.1%) to them 3 x a day for 3 days. I do not even consider going back on Dapsone.
By the way, no one really knows how or why Dapsone works. It is actually an antibiotic, originally used for Leprosy! I believe it has very strong antihistamine effects, and maybe that is the mechanism of effect in DH. I have been told this by several dermatologists. In addition, my severe hay fever totally disappeared during the 2½ years I took Dapsone, and was gone almost immediately as soon as I was gluten free.
No one really knows what might happen if a person took Dapsone forever. And it should not be necessary, providing he or she stays gluten-free for life. If he or she does not, the Dapsone will in fact only correct the skin problem, doing nothing for the intestinal damage, as it does not in any way prevent injury to the villi.
Good luck. And find a knowledgeable dermatologist.
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