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Anyone Use Aczone For Dh?

christiking

By christiking
in Dermatitis Herpetiformis

Recommended Posts

christiking Newbie
christiking
Posted

Hi -

I was diagnosed with DH just last week. I ''knew" sometime late last year (post baby, post loss of my father, dx with hypothyroidism postpartum) that I had celiac disease and finally had it confirmed via labs and the DH biopsy. I'm trying to stay off the Dapsone oral drug and be gluten free, but I do have DH outbreaks still. My derm suggested the new drug Aczone with is the topical Dapsone that is out. Does anyone have experience good or bad with Aczone and did it really help your DH?

Thanks!

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ravenwoodglass Mentor
ravenwoodglass
Posted

How long have you been gluten free? It does take a bit for the antibodies to leave the skin. I don't have any experience with that drug but the diet followed strictly will heal the DH. Make sure you are checking everything you eat or put on your body. Check all your toiletries and lotions, shampoos and makeup and also for the time being eliminate gluten grain vinegars and distilled alcohols. You may after your DH heals be able to add the vinegars and alcohols back in, not all react, but it is a good idea to be super strict at first and then add in items one at a time and watch for a reaction.

ChemistMama Contributor
ChemistMama
Posted

Oh wow, a topical dapsone? I'm talking to my dermatologist about this!! I was 'diagnosed' in December (blood test only) and have been gluten-free since then, and had a biopsy this week to confirm (new dermatologist). If the biopsy says DH and my bloodwork is OK I'll start dapsone soon..I didn't want to, but after I went gluten-free my DH went crazy on me, it's all over my right leg, both elbows, and now my right hand. If a topical will work and have less side effects I"m there!! I've been doing some web-surfing and found a description of it here:

Open Original Shared Link

Right now its indication is for a type of acne, and I haven't found any studies that say it works for DH, but I"ll keep hunting!

christiking Newbie
christiking
Posted
  • Author
Oh wow, a topical dapsone? I'm talking to my dermatologist about this!! I was 'diagnosed' in December (blood test only) and have been gluten-free since then, and had a biopsy this week to confirm (new dermatologist). If the biopsy says DH and my bloodwork is OK I'll start dapsone soon..I didn't want to, but after I went gluten-free my DH went crazy on me, it's all over my right leg, both elbows, and now my right hand. If a topical will work and have less side effects I"m there!! I've been doing some web-surfing and found a description of it here:

Open Original Shared Link

Right now its indication is for a type of acne, and I haven't found any studies that say it works for DH, but I"ll keep hunting!

My DH comes and goes about quarterly and actually got worse for a while as I went gluten free on food. It's getting better now using Clobex lotion. I'm not working on the shampoos, etc. Hopefully I can keep it at bay. I'd love to hear what your experience is with Aczone if you try it. He gave me several free samples and a coupon if I have it filled for $30/off initial and $20/off next two refills. I figure I'll try it on my next DH outbreak. I'm his first DH pt in a long time and I can't find it on the Web any experience stories either, but it is quite new.

ang1e0251 Contributor
ang1e0251
Posted

My DH cleared up, slowly, on the gluten-free diet. I don't get it any more unless I have a glutening. Look to your food and toiletries. There may be hidden in a surprise product.

  • 2 weeks later...
kakaiba Rookie
kakaiba
Posted
Hi -

I was diagnosed with DH just last week. I ''knew" sometime late last year (post baby, post loss of my father, dx with hypothyroidism postpartum) that I had celiac disease and finally had it confirmed via labs and the DH biopsy. I'm trying to stay off the Dapsone oral drug and be gluten free, but I do have DH outbreaks still. My derm suggested the new drug Aczone with is the topical Dapsone that is out. Does anyone have experience good or bad with Aczone and did it really help your DH?

Thanks!

i was diagnosed with DH 2 years ago, i have been to gluten-free diet since march of 2007, i didnt use dapsone, my derma put me on to corticosteroid meds(she said its less of side-effects than dapsone), anyway, i only used it for 9 mos, and never take oral meds since dec.31, 2007.

now i only use floucinolone 05% cream with tea tree oil to my rashes(mines minimal), and it helps.

  • 5 years later...
J3C Newbie
J3C
Posted

Oh wow, a topical dapsone? I'm talking to my dermatologist about this!! I was 'diagnosed' in December (blood test only) and have been gluten-free since then, and had a biopsy this week to confirm (new dermatologist). If the biopsy says DH and my bloodwork is OK I'll start dapsone soon..I didn't want to, but after I went gluten-free my DH went crazy on me, it's all over my right leg, both elbows, and now my right hand. If a topical will work and have less side effects I"m there!! I've been doing some web-surfing and found a description of it here:

Open Original Shared Link

Right now its indication is for a type of acne, and I haven't found any studies that say it works for DH, but I"ll keep hunting!

Wow.  I'm interested in your comment that the DH went crazy AFTER you stopped gluten.  That's exactly what's happening to me.  I can't understand it!  It wasn;t even classic DH UNTIL I had been gluten-free for about 1 month.  Now it's all over the insides of my elbows, armpits, back, collarbone, behind the knees, groin.  I'm as gluten free as I can possibly be.  I don't put anything in my mouth unless I've researched it, cross referenced it, confirmed it gluten-free 2 ways, and then washed it thoroughly.  So, is this typical?

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