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Dapsone alternative

KevinSweet

By KevinSweet
in Dermatitis Herpetiformis

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KevinSweet Newbie
KevinSweet
Posted

I have been taking dapsone for 27 years and was up to 300mg a day. I tried tapering off, but once I got below 200mg, my symptoms returned (dermatitis herpetaformis). I have been completely gluten free for about 3 years. The problem is now I have dapsone induced peripheral neuropathy, which can be cured by stopping dapsone. What is my best alternative medicine for my symptoms and how do I switch? HELP!

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squirmingitch Veteran
squirmingitch
Posted

I am so sorry to hear this & sorry you are still having dh symptoms. You should never have been on Dapsone for 27 years. It is only meant to carry you until the antibodies get out from under your skin & you get the diet down pat. 2 years is the usual for being on Dapsone.

I am afraid you are a victim of Dapsone & this is one of my arguments against Dapsone. While taking Dapsone, the rash is not experienced & so you think you're eating gluten free & doing a good job of it. After all, the rash is not presenting right? The reality is the Dapsone is preventing the rash from screaming a warning to you that you ARE IN FACT getting glutened, cross contaminated &/or are ultra sensitive & ultra sensitive is very common for those of us with dh. But then, one day, perhaps years down the line as in your case, the day of reckoning comes. You have to get off the Dapsone but when you try to, the rash comes roaring back. Reason? Unbeknownst to you, for 27 years the antibodies have been piling up under your skin. For 27 years, you have been living without a barometer for gluten exposure.

Now you pretty much have no choice but to go cold turkey & get super strict with your diet. For 27 years, you have been living without a barometer for the rash. DH is extremely sensitive to the tiniest amount of gluten. Do NOT eat out unless you feel like playing Russian roulette with gluten & the rash. 

OK, some suggestions. Ditch the Dapsone (according to doctors orders) & go on the Fasano diet for at least 6 months starting NOW.

Open Original Shared Link

Limit you iodine intake for 2 weeks. Here's a link for a low iodine diet, but don't eat the gluten.

Open Original Shared Link

And read this:

https://www.celiac.com/forums/topic/115445-relief-and-it-isnt-dapsone/?tab=comments#comment-962730

 

 

ravenwoodglass Mentor
ravenwoodglass
Posted

Please follow Squirmy's advice. I do hope your doctor has been frequently checking your liver function. I found cool compresses to help a bit. It will take some time but you will heal. You may also find that the neuropathy you are experiencing isn't so much a side effect of the drug as a symptom of nerve impact from glutening. I hope you heal quickly and you might want to change doctors.

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