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Dapsone Fail
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Tried Dapsone for six days to see if it would help, but could not take the side effects. If it's even possible, I was actually itchier on the meds, had numbness in hands and feet, insomnia some nights, zombie-like stupor most of the day. I would rather be itchy and have all my faculties working, thank you very much.

So there goes my trial of dapsone for a diagnosis plan. So, either the meds didn't work (not the right dose or didn't take it long enough) or it just isn't DH. I'm so frustrated!

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It sounds like you had a bad reaction to the Dapsone. Some people get a rash from it. How ironic, you are trying to treat a rash and you get one instead.

It is my understanding that if a DH patient can tolerate Dapsone, relief happens in 2 or 3 days. That was my experience. It took about three days, the itching was mostly gone and I started healing. It took about a month for all the bad side effects to kick in and force me to stop taking the drug.

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Why not get a biopsy for DH?

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Dapsone can be a pretty toxic med. IMHO it was irresponsible of your doctor to give you a 'trial' as a form of diagnosis. See if you can get of biopsy done by a derm who is familiar with DH. They need to biopsy the area next to an active lesion not the lesion itself and the lab needs to be looking for DH. If you strongly suspect DH then the best 'med' for it is the diet. Some see a lessening of new lesions pretty quickly although you have to be very strict with the diet, including topicals, for the antibodies to leave the skin. Until those antibodies have left the skin it will take very little gluten to flare the rash but over time the breakouts will be less severe.

I had a really bad case and within 2 weeks gluten free I stopped getting new lesions and the ones I had were slowly healing. After 2 years gluten-free a breakout went from being the first glutened symptom to the point where I would only get a small blister or two that would heal quickly without leaving those lingering purple scars.

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