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Recent Activity
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- suek54 replied to suek54's topic in Dermatitis Herpetiformis10Awaiting dermatitis herpetiformis confirmation following biopsy
Many thanks for your reply Rogol72. People have been very kind and made all sorts of suggestions. I am bearing them all in mind but at this early stage just desperately need to be itch free. I have literally had this horrid rash from scalp to feet. My most recent outbreak was all across my face as well. At one stage it was so widespread I was having... -
- Rogol72 replied to suek54's topic in Dermatitis Herpetiformis10Awaiting dermatitis herpetiformis confirmation following biopsy
Hey @suek54, I also have Dermatitis Herpetiformis. I used to be on Dapsone but have managed to wean myself off it after many attempts. It's quiet a toxic drug, as it affects the bone marrow and red blood cells. It also artificially reduces Hemoglobin A1C. Mine was at 21 at one stage, I think normal is around 37. With dermatitis herpetiformis, you need... -
- suek54 replied to suek54's topic in Dermatitis Herpetiformis10
Awaiting dermatitis herpetiformis confirmation following biopsy
Hi all Biopsy confirmed dermatitis herpetiformis. Strict gluten free diet going OK, I cook nearly everything from scratch anyway and am finding gluten free adaptations for most recipes. I seem to be tolerating 50mg Dapsone well, regular blood tests OK so far. Next derma appt in 8 weeks. I have some continuing itching and rash outbreaks, though... -
- trents replied to dani nero's topic in Dermatitis Herpetiformis191DH Photo Bank
@KeriRae, have you been diagnosed with celiac disease or with dermatitis herpetiformis? -
- KeriRae replied to dani nero's topic in Dermatitis Herpetiformis191DH Photo Bank
I've had this same rash on my back on and off for the last year or two. I was taking LDN to help with other issues but quit awhile back. I'm wondering if LDN would help with this rash.
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0March 18, 2026 10:15 PM
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Posts
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Many thanks for your reply Rogol72. People have been very kind and made all sorts of suggestions. I am bearing them all in mind but at this early stage just desperately need to be itch free. I have literally had this horrid rash from scalp to feet. My most recent outbreak was all across my face as well. At one stage it was so widespread I was having very bad thoughts. Dapsone has changed that. I think my situation is worsened by Addison's Disease. I am totally steroid dependent. Its a constant trade-off between increasing steroids to cope with dermatitis herpetiformis vs increased risk of high steroids. I also have hypothyroidism. In fact dermatitis herpetiformis is my fifth autoimmune condition. Hey ho, I'm muddling through. Its nice to hear that others with the condition have found various ways to get back on track. I don't want to be on Dapsone a day longer than necessary but it's far better than the awful state I was in. My dermatologist is keeping a close eye on my bloods. So far, so good. Thank you again for your advice. Very much appreciated. Sue
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Hey @suek54, I also have Dermatitis Herpetiformis. I used to be on Dapsone but have managed to wean myself off it after many attempts. It's quiet a toxic drug, as it affects the bone marrow and red blood cells. It also artificially reduces Hemoglobin A1C. Mine was at 21 at one stage, I think normal is around 37. With dermatitis herpetiformis, you need to be really strict. It wasn't until I focused on getting the trace minerals the body needs that I managed to get off it. I believe getting the thyroid numbers in the optimal range also helped with Iodine and Selenium. Iodine doesn't bother me for some reason, but flares others as knitty kitty said. I take Viridian Trace Mineral complex and it's made a huge difference, among other vitamins and minerals. Now I can tolerate gluten free oats which I could never eat before. Though I only have them very occasionally in the form of gluten free soda bread . One thing I miss is my Mums Irish soda bread. Hope this helps.
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Hi all Biopsy confirmed dermatitis herpetiformis. Strict gluten free diet going OK, I cook nearly everything from scratch anyway and am finding gluten free adaptations for most recipes. I seem to be tolerating 50mg Dapsone well, regular blood tests OK so far. Next derma appt in 8 weeks. I have some continuing itching and rash outbreaks, though nowhere near as severe as they were, so I am hoping for an increased dose, as the effect only seems to last 6-7 hours. I think I may be burning through it more quickly than some due to other medication. Also I cannot mount a response to inflammation due to Addison's Disease. I hope others are finding their way though the minefield that is dermatitis herpetiformis. Hang on in there! Sue (in UK)
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@KeriRae, have you been diagnosed with celiac disease or with dermatitis herpetiformis?
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I've had this same rash on my back on and off for the last year or two. I was taking LDN to help with other issues but quit awhile back. I'm wondering if LDN would help with this rash.
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