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DH, Dapsone, anemia and dermatologist?

FranDaMan

By FranDaMan
in Dermatitis Herpetiformis

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FranDaMan Apprentice
FranDaMan
Posted

Infrequent poster as I'm "normally" under control. I was diagnosed with DH/Celiac in early 2009. My primary physician put me on Dapsone and it was amazing at how rapidly symptoms were abated. Jump on the gluten-free diet and move on. After about a year I'd had enough of reading side effects of Dapsone so began weaning off. One pill every other day, 1/2 every other day, etc...until I'd gotten off and no more flare ups. In September of 2012 I traveled to Europe (Oktoberfest and ALL that brings). As expected my rash reemerged a month later. Back on the meds (already back on the diet). We're now well over 3 years and I'm still struggling with the rash. My primary was concerned with some blood work (every 6 months) last month and I got off Dapsone completely. About 7 weeks now. Follow up blood work a month later and much improved. The DH flared right up of course and I'd hoped it would be a parting gift but it is still going strong. I'd forgotten how horrible it is!

Anyway, my primary now has me heading to a dermatologist at this late stage in the game. I'll keep the appointment as I should, but I'm curious if there is really anything to be done beside the diet and waiting it out? I've heard of a Dapsone cream but have no idea of it's efficacy or effect on blood and liver. 

Looking for information prior to the visit on the off chance I'm getting someone who will want shots and steroids and all of that stuff and dismiss the rash for what it actually is.

Thanks

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squirmingitch Veteran
squirmingitch
Posted

If you're gluten free then a biopsy of the rash will not come back positive unless you're getting some serious cross contamination. Take it from me & a few hundred others who have posted here that steroids are not the way to go. Oh they work as long as you're on them but the minute you quit, POW! you get a rash backlash that you do not even want to experience! I too have heard of the topical Dapsone called Aczone gel:

Open Original Shared Link

You can read the warnings there. I have never used it.

There is also Gabapentin but it won't stop the rash, just make the itch less as I understand it. I've never used it myself but have read what people who did have said about it on this forum.

Open Original Shared Link

Otherwise there are some "other" antibiotics but they don't work as well as Dapsone and I might add that you risk the longer you stay on an antibiotic.

Be pristine in your diet. You couldn't PAY me to eat out!!!!!!! Russian roulette anyone?

You probably ought to have celiac serum panel done to make sure you are diet compliant & that should tell you if you're getting cc'd somewhere.

FranDaMan Apprentice
FranDaMan
Posted
  • Author

Thanks. I couldn't remember the name of the cream. Seems it is acne oriented and I haven't had that in 40 years. Although I will discuss it with the dermatologist. 

I eat mostly at home but there is one weakness and that is a fish fry. I know the ingredients are all gluten-free but I need to talk to the owner to see about the oil. That could be the culprit.

squirmingitch Veteran
squirmingitch
Posted

You're welcome! Yes, the oil could very well get you if it's not pure. Plus any cutting boards that are used there.

  • 2 weeks later...
Sybyl Newbie
Sybyl
Posted
On April 7, 2016 at 1:45 PM, squirmingitch said:

If you're gluten free then a biopsy of the rash will not come back positive unless you're getting some serious cross contamination. Take it from me & a few hundred others who have posted here that steroids are not the way to go. Oh they work as long as you're on them but the minute you quit, POW! you get a rash backlash that you do not even want to experience! I too have heard of the topical Dapsone called Aczone gel:

Open Original Shared Link

You can read the warnings there. I have never used it.

There is also Gabapentin but it won't stop the rash, just make the itch less as I understand it. I've never used it myself but have read what people who did have said about it on this forum.

Open Original Shared Link

Otherwise there are some "other" antibiotics but they don't work as well as Dapsone and I might add that you risk the longer you stay on an antibiotic.

Be pristine in your diet. You couldn't PAY me to eat out!!!!!!! Russian roulette anyone?

You probably ought to have celiac serum panel done to make sure you are diet compliant & that should tell you if you're getting cc'd somewhere.

Triple  Amen about the eating out.  I imagine that most of us true Celiacs tolerate zero parts per million of gluten, never mind 20 ppm.  The only time I got DH or other Celiac symptoms was the infrequent venture to a chain restaurant who cannot control their output as much as they claim.  I think in general, although their intentions are good, people don't understand about cross contamination (and the waitress said, "I'll just remove the croutons." ).....the multi sourced spoon, spatula, pots, pans, toaster, and might as well mention the dreaded sponge.   Been an 11 year diagnosis for me, with Type 1 Diabetes for 51 years.  Intentionally eating, living well, and very grateful for today's medical community!!!  Good luck with your journey!

  • 4 weeks later...
elefky Apprentice
elefky
Posted

After 21 years, I still take Dapsone daily.  My dermatologist requires blood test annually.

Besides being gluten-free, try avoiding iodine.  It doesn't cause a flare-up but it can aggravate one.  Don't use iodized salt and avoid shellfish.

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