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Dapsone - Occasional Use

Hopeful1950

By Hopeful1950
in Dermatitis Herpetiformis

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Hopeful1950 Explorer
Hopeful1950
Posted

I have a diagnosis of DH and have been gluten free for 10 weeks now and although it is slow progress, I am feeling relief from the bone deep itching that I used to have. The rash is taking longer to heal, but thanks to this forum I know that I have to be patient and stick strictly to the diet. I also am avoiding iodine in salt and supplements and gluten in my personal skin care products. I will be travelling in October for a week and November for a week. I have a friend who has DH and he uses Dapsone when he can't be sure that he won't get accidentally glutened. He does not take it all the time because of the side effects.

Have any of you used it in this way? Here and there? Also, would taking it for a week cause the side effects that everyone keeps talking about? I have been working so hard at being gluten-free and would hate to destroy all my progress in a week away from home. I'd avoid the travel, but it is required for my job.

Thanks to all of you in advance for any help you can give me. And for all the great information on this forum.

  • 3 weeks later...
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Doup Newbie
Doup
Posted

I did use dapsone in that fashion for a while, however the side effects are absolutely horrible and it seemed like they kicked in almost right away. Its been almost 15 years so my memory may be fuzzy on that one.

I would not recommend using it at all, but if you use it sparingly. That said, its kinda like heroin - even tho the side effects suck, it is really hard to quit.

I have found that regular OTC Claratin does help me. I don't know if it works for anyone else, but I do feel better if I have a break out.

Hopeful1950 Explorer
Hopeful1950
Posted
  • Author

Doup, thanks for replying. I am really torn for the reasons you have described. I appreciate your input.

lovegrov Collaborator
lovegrov
Posted

It's a mistake to automatically assume you will have some kind of horrible side effects. Many people with celiac and many with leprosy take dapsone with no side effects whatsoever. I took it for more than 20 years nearly every day. My doctor started me on too much (about 100 mg per day I think) and I did indeed have a few effects. I ended up at 25 mg per day and had no trouble at all. None. My father took it for more than 20 years. No side effects. (Neither one of us knew or was told about the connection with celiac)

There's absolutely no way to know if you will have side effects without trying it, and if you do have them, stop taking it or reduce the dose. It's that simple. None of the side effects are permanent after taking a few doses.

richard

Hopeful1950 Explorer
Hopeful1950
Posted
  • Author

Hi Richard. I was hoping you would reply. I thought you had taken the Dapsone, but couldn't find a post where you talked about it.

I have decided that it is well worth the risk. I am suffering so much with this rash. I know it will take up to two years for the antibodies to clear my skin and the 7 years I have spent in shame, pain, and itching is enough. I'm ready for some relief. I have a call into the doctor about getting an RX.

I'll report back once I have tried the drug.

Wendy

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