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Anyone Use Aczone For Dh?


christiking

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christiking Newbie

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

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

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
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

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
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

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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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
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      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
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      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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