Is there a fix for Dermatitis Herpetiformis.

After living with DH for 3 years and being on Dapsone the same, I am wondering if anyone has a good practitioner who understands this condition and can help get to a solution. I'm very discouraged regarding my lack of progress, and the probability that taking Dapsone may be causing permanent damage internally. I have been treating at Mayo Clinic, but the doctors are just as frustrated as I am. Help.

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  • I had same thing still hanging about after 2 years then I got prescribed steroids for a heart condition where meds were really affecting my asthma. I took the antibiotics for a couple of months to manage asthma until I'd had my heart procedure. Anyway the patches of DH cleared up as did a verruca I'd had 3 yrs. GP suggested it was coincidental but the verruca and those pesky blistery sticky itchy patches of skin were not budging despite ongoing treatments so I personally think the steroid played a part 🤔

  • I am in my second year now but only got diagnosed 2 months ago. I did notice that when the doctor tried Antibiotics my skin patches cleared up for a couple of weeks. I cannot take the Dapsone because of other conditions however the Gluten free diet appears to be starting to reduce the itchy patches. Long way to go I think. Good luck and let us know if anything else works for you.

  • Mine rear up when i have milk, gp agrees but cant get consultant to arrange for allergy test. So im pretty much self diagnosed, no milk/dairy no spots, back on milk and up they pop. You could see if going lactose free helps.

  • When a biopsy confirmed that I had DH, I told the consultant I didn't want to take Dapsone because I looked it up and was unhappy that the side effects included heart problems. He replied 'yes, it's a serious medication' (!!). So he suggested I use Dermol instead of soap and quite a strong steroid ointment, mometasone furoate 0.1% (ointment stays much longer than cream) sometimes branded as Elocon. When the patches are mild, I use milder cream such as betnovate RD (ready dilute). When it itches like fury, I run it under a cold tap to reduce the inflammation if it's somewhere such as my elbows. Over time, combined with gf diet, the DH has almost disappeared and I just get the off bit every now and again on my elbows or buttocks. Best of luck, hope this works for you

  • Thank you a lot. Best news yet.

  • Hi, I have DH but I decided not to take Dapsone, if I keep off gluten I don't get the rash. I think I may be allergic to soy lecithin. I would try to get off Dapsone.

  • Mine cleared up with a super-strict GF diet, and I mean super-strict, probably within a year of diagnosis and going GF. And reducing halogen compounds like iodine and halides, even down to avoiding sea salt! It was hard because I ate a lot of (sea) fish. I am now able to eat normally - for a coeliac anyway! I'm just grateful I no longer have the blisters, itching and burning. Might be time to reassess your diet and look at the labels again.

    rarediseases.org/rare-disea...

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