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Topical Dapsone

Hopeful1950

By Hopeful1950
in Dermatitis Herpetiformis

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Hopeful1950 Explorer
Hopeful1950
Posted

Hello Everybody,

It's 4:20 am my time and as usual I am awake itching like fire. I am in the process of testing for DH and was wondering if anyone has used topical dapsone along with gluten free diet. The topical product has been successful with acne. I have decided that if, in fact, the diagnosis is DH I'll go for it and take the Dapsone. I have suffered for 6 years now and have had enough itching.

Also, in the absence of a positive test result, have any of you gone ahead and eliminated gluten from your diet and had success relieving the symptoms of this tortuous rash?

I have been reading the forums for several days now and you guys are great...lots of good information.

Thank you.

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idonteatwheat Rookie
idonteatwheat
Posted

Have you looked into what products you are using on your hair and skin? I've had to find gluten free shampoo and soaps to get my skin calmed down. I used to get an incredible itchy scalp, face, shoulders and back, it turns out I was using an intensive conditioner with wheat germ oil at times and it would cause a flare up of symptoms. I've been using a gluten-free shampoo now for about 4 weeks and my skin has improved. Maybe you are using something that is aggravating the dh?

rdunbar Explorer
rdunbar
Posted

I've had a really bad case of DH on my scalp for @5 years, and it got much worse the last year or so until I stopped using any dairy products, and anything with corn syrup, xantam gum is just another name for corn syrup, so watch out. also any processed corn, chips ,tortillas, are bad mojo. swear to God, my DH is much much better in the last few weeks since i phased out dairy. i was just putting a little in my tea, but it was enough to keep my DH in full blown mode. I swear it's 50% less itchy or more, and it does'nt look nearly as inflamed, and is'nt oozing like it used to.I'm actually going out in public w/out a hat on for the first time in years! I hope this works for you, too!

ChemistMama Contributor
ChemistMama
Posted

I had 'suspicious' bloodwork (aka the old tests, not the ttg blood test) and a negative biopsy, but I went gluten-free. Some people get relief after going gluten-free rather quickly, and some, like me, actually have a bad flare up after going gluten-free before things get better. I took oral dapsone for a few months(I don't recommend it!), but I've found that topical dapsone does help my older lesions when I have a flare-up when I get CC'd. I also recommend sarna sensitive lotion( the one that doesn't smell like mentholatum), it has a pain reliever in it which works great to soothe the itch. Also, watch your iodine and NSAID intake (like ibuprofen and naproxen), those can aggravate a DH breakout. Iodine is in iodized salt, shellfish, and seaweed, as well as OTC multi vitamins.

If you want to try topical dapsone (Aczone), you need to know that it's a prescription drug and is also expensive ( a 30 g tube is over $100). My suggestion is to ask your dermatologist for a few samples first before you spend a lot of $$ on something that may not work for you.

  • 2 weeks later...
Hopeful1950 Explorer
Hopeful1950
Posted
  • Author

I had 'suspicious' bloodwork (aka the old tests, not the ttg blood test) and a negative biopsy, but I went gluten-free. Some people get relief after going gluten-free rather quickly, and some, like me, actually have a bad flare up after going gluten-free before things get better. I took oral dapsone for a few months(I don't recommend it!), but I've found that topical dapsone does help my older lesions when I have a flare-up when I get CC'd. I also recommend sarna sensitive lotion( the one that doesn't smell like mentholatum), it has a pain reliever in it which works great to soothe the itch. Also, watch your iodine and NSAID intake (like ibuprofen and naproxen), those can aggravate a DH breakout. Iodine is in iodized salt, shellfish, and seaweed, as well as OTC multi vitamins.

If you want to try topical dapsone (Aczone), you need to know that it's a prescription drug and is also expensive ( a 30 g tube is over $100). My suggestion is to ask your dermatologist for a few samples first before you spend a lot of $$ on something that may not work for you.

Thanks everyone for the info. I really think I'm going to go ahead and try going gluten free. I am fortunate to have a great insurance plan through my work so went ahead and got the topical Dapsone...crossing my fingers. I'm terrified to take the oral. In general how long does it take to see any changes after going gluten free? In my opinion, if I get relief from this horrible itching rash and lesions by going gluten free that's as good as any lab test...right?

hippo33 Apprentice
hippo33
Posted

I've had a really bad case of DH on my scalp for @5 years, and it got much worse the last year or so until I stopped using any dairy products, and anything with corn syrup, xantam gum is just another name for corn syrup, so watch out. also any processed corn, chips ,tortillas, are bad mojo. swear to God, my DH is much much better in the last few weeks since i phased out dairy. i was just putting a little in my tea, but it was enough to keep my DH in full blown mode. I swear it's 50% less itchy or more, and it does'nt look nearly as inflamed, and is'nt oozing like it used to.I'm actually going out in public w/out a hat on for the first time in years! I hope this works for you, too!

hippo33 Apprentice
hippo33
Posted

hi i was just wondering what dairy and gluten have in common because sometimes i think im 100 percent gluten free then i flare up,i have a glass of milk in the morning and i also eat nuts for snacks can some food even if gluten free cause a flare up im confused and also i wounder about shampoo and stuff dont u have to ingest it

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  • 2 weeks later...
Guest doradomiel
Guest doradomiel
Posted

hi i was just wondering what dairy and gluten have in common because sometimes i think im 100 percent gluten free then i flare up,i have a glass of milk in the morning and i also eat nuts for snacks can some food even if gluten free cause a flare up im confused and also i wounder about shampoo and stuff dont u have to ingest it

Gluten and dairy have similar proteins, and yes you can get "glutened" thru your skin. Happens to me ALL the time. So yes, check your skin, hair, and household products (for ex: some Dawn and Ajax dishwashing liquids have gluten). Check anything that would touch your skin and try a dye free/fragrance free laundry detergent.

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