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33 in Ca Celiacs and DH

Dapsone? 100 Mg For 20 Years?

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Does anyone else take Dapsone for DH? I haven't found much research on the risk/harm that Dapsone causes after long periods of time. Any insight on this would be great!

I take 100 mg daily. When/if I miss a dose, I get blisters within 30 minutes. The blisters did not subside when I was on the gluten-free diet for 6 months. Is that common?

Thank you so much!!

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Like I said on the other thread, I can't believe a doc would give it to you for 20 years and not insist you eat gluten free. I suppose you will have grounds for a malpractice suit but 20 years of damage isn't worth the money to me.

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Yes, that is very common. I have DH and I am one year gluten free and I still have 4 sores that flare from time to time. For DH some people have to avoid not only gluten but iodine also. It has been found that iodine can keep the antibodies active in the skin causing eruptions even when one is gluten free. Iodine is found in iodized table salt, you can use uniodized table salt, it is also in all shellfish. DH lesions, blisters and outbreaks can take up to 2 years being totally gluten free to subside. The antibodies remain in the skin for up to 10 years. At any time I get accidental cross-contamination or trace gluten, I get blisters and flares for several weeks.

I took dapsone for one week. It was wonderful and worked great, but the second week when we upped it to 100 mg, I broke out in an all over my body rash of pinpoint red dots. Others get anemia...there is research on it if you google the long term side effects of Dapsone..you will find other things like muscle weakness. It is strongly advised that people taking Dapsone have blood tests every two weeks to a month to monitor the blood to be sure the negative effects are not happening. I had to stop taking it immediately and it took a while for the rash to subside. You must eliminate gluten entirely and limit iodine until the rash heals completely. My Endocrinologist said it wouldn't be harmful to limit iodine for up to 3 months, but to add it back. But you have to make your own decision on the iodine issue. Some people don't feel comfortable eliminating or limiting it. Iodine is also found in asparagus, eggs, milk products, and shellfish. Milk products often contain carageenan and that is a seaweed and therefore high in iodine.

If you have DH, Dapsone can control the rash, but the damage from gluten is still happening. DH Celiacs have a higher incidence of being supersensitive to gluten and also a higher incidence of the cancers associated with Celiac. Get on the web and read about Dermatitis Herpetiformis. I think your Dr. is not doing you any good to give the medication without requiring a gluten free diet. It's scary to me. Even with strict avoidance of gluten and iodine DH can still take a long time to heal and the antibodies take a long time to leave the skin. I will send you some articles when I have more time. But for now browse the DH forum and google DH so you know what you are dealing with. It is a very serious disease.

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Wow! Thank you!! I didn't realize that DH was as serious as Celiacs. I look forward to reading additional doc's when you have the time to send them. :). I will research Dapsone and DH. I have tried a few different Dieticians and have been so disappointed with their lack of knowledge.

Iodine too! Geez, shellfish is my all time favorite food with the second being Chineese food. I am trying to quit smoking... Now I am going to add the gluten-free diet... But in return- I'm adding LIFE!!

Thank you so much!! The info I have received from my only 2 post is more than I have received in total- for the last 20 years!

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It looks like the other responses pretty much say it all. Before docs realized that DH was from celiacs, they just knew that Dapsone controlled it and didn't really know why. But in more recent years after they realized that the problem was occurring in the gut from eating gluten, they give Dapsone to control the uncomfortable symptoms along with a strict gluten free diet to prevent accumulation of more antibodies in the skin.

My main comment is that I'm jealous that you are able to take Dapsone 100 mg without feeling bad! It kicked my butt! I felt awful when I took it. So awful that the relief of the itching wasn't worth it.

Hopefully you have been lucky and haven't sustained terrible damage to your gut as a result of the docs not telling you that you need to be gluten free.

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I took dapsone for more than 20 years, mostly 25-50 mg a day. My father took it for 30. Our doctor did not know about celiac But he DID urge us to quit eating wheat, which we didn't want to do.

Dapsone can have side effects but if you look the really serious ones are rare and pretty much reverse when you stop taking it or cut back. I have never heard of doing blood tests every two weeks or even once a month, EXCEPT right at the beginning to get the dose regulated.

richard

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Does anyone else take Dapsone for DH? I haven't found much research on the risk/harm that Dapsone causes after long periods of time. Any insight on this would be great!

I take 100 mg daily. When/if I miss a dose, I get blisters within 30 minutes. The blisters did not subside when I was on the gluten-free diet for 6 months. Is that common?

Thank you so much!!

I was on Dapsone 50-100mg for 12 years for "Bechets Syndrome" - (diagnosed at 16) stopped taking it nearly 2 years ago and am riddled with Celiac DH symptoms. Some Dr's are thinking I was misdiagnosed. I was left to manage it on my own with no regular blood testing and was always severly anaemic by the time they did do blood tests. Iron levels are still low but not as bad since being off it. If I forgot to take a tablet I would get a rash come up - looked like hives, ive just discovered. Now I permanently have them, suggesting the Dapsone may have helped. I'm not diagnosed with Celiac DH but I do feel I tick all the boxes and have pictures Im trying to post...

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