Reviewer: shelley, 35-44 Female on Treatment for 5 to less than 10 years (Patient)

Comment:
I have been using dapsone for 7 years for dermatitis herpetiformis. I've had celiac disease for over 20 years and suffered with this rash for 13 years before my doctor would send me to a dermatologist (she was concerned about the anemia it can cause.)It has been a miracle drug for me. I started out at 100mg/day. I took it for 11 days and then broke out into a peppery body rash. I was told by my ph ... Show Full Comment

Comment:
I have been using dapsone for 7 years for dermatitis herpetiformis. I've had celiac disease for over 20 years and suffered with this rash for 13 years before my doctor would send me to a dermatologist (she was concerned about the anemia it can cause.)It has been a miracle drug for me. I started out at 100mg/day. I took it for 11 days and then broke out into a peppery body rash. I was told by my pharmacist to stop using it until the dh rash appeared again (it took about 4 days). I take on average 3 pills/week. This keeps it under control. Unfortunately following the gluten free diet does not cure the rash no matter how strict I am. The dermatologist says this happens to a small percentage of celiacs. I was recently diagnosed with vitamin B12 deficiency and now take monthly shots. I had started taking synthroid for thyroid issues and this seemed to make the dapsone less effective even though I took them a few hours apart. This made me need the dapsone more often and the peppery rash came back very badly.I stopped taking the synthroid and am back to needing the dapsone only 3 times/week.My doctor will probably not be happy with me but I'd rater go without synthroid than discontinue the dapsone. I think I would go out of my mind with the itching and blistering. Has anyone else had adverse reactions with synthroid and dapsone?
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Reviewer: cekmal, 45-54 Female on Treatment for 1 to 6 months (Patient)

Comment:
I initially took 50mg a day with no noticeable benefits, after increasing to 100mg there has been an improvement in my vasulitis.

Comment:
I initially took 50mg a day with no noticeable benefits, after increasing to 100mg there has been an improvement in my vasulitis.
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Reviewer: kp, 19-24 Male on Treatment for 1 to less than 2 years (Patient)

Comment:
This medication is my miracle drug, as many have probably said before me. I got my DH diagnosis about 5 years after it first appeared. I only had adverse effects in the first few weeks, which included change of sleeping patterns, loss of appetite, muscle weakness and irritability. But after the first few weeks everything was just fine, have been taking it with no problems since then. But recently ... Show Full Comment

Comment:
This medication is my miracle drug, as many have probably said before me. I got my DH diagnosis about 5 years after it first appeared. I only had adverse effects in the first few weeks, which included change of sleeping patterns, loss of appetite, muscle weakness and irritability. But after the first few weeks everything was just fine, have been taking it with no problems since then. But recently my health insurance lapsed, and my Dermatologist refused to refill without doing my labs, which is understandable, but ever since I ran out of the medicine I've been having some very strange side-effects, including blood blisters in every finger and toe, all over my palms, blisters larger than grapes that just never stop burning, pins and needles in the affected areas. Constant nausea, no matter what I eat, extreme fatigue. I ended up going to the ER because it was hurting so bad that I could hardly move, they did my labs, and now I just have to wait for my meds to come in, (have to order them every time I need a refill). But my question is whether anyone else has ever had side-effects similar to mine when abruptly stopping the medication?
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Reviewer: 25-34 Female on Treatment for 1 to 6 months (Patient)

Comment:
I was diagnosed with Wells Syndrome a few months ago and my Dermatologist put me on Dapsone. I take 50mg/day adn after 30 days, I stopped getting lesions. My Dr. said I could try taking 25 mg/day.... after the 4th day I got a new lesion! so I'm back to 50 mg/day. I am a runner, and now that I've been on it for over 2 months I think it is begining to affect my lungs. I NEVER had problems breath ... Show Full Comment

Comment:
I was diagnosed with Wells Syndrome a few months ago and my Dermatologist put me on Dapsone. I take 50mg/day adn after 30 days, I stopped getting lesions. My Dr. said I could try taking 25 mg/day.... after the 4th day I got a new lesion! so I'm back to 50 mg/day. I am a runner, and now that I've been on it for over 2 months I think it is begining to affect my lungs. I NEVER had problems breathing when I run. Today I thought I was going to have to call an ambulance for oxygen... no joke. Think it's from the dapsone?
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Reviewer: 19-24 Female on Treatment for 6 months to less than 1 year (Patient)

Comment:
I was prescribed too high a dose at first and felt very dizzy. Within the first year of being on it I had my blood tested 5 times. Not fun, but at least I'm healthy.

Comment:
I was prescribed too high a dose at first and felt very dizzy. Within the first year of being on it I had my blood tested 5 times. Not fun, but at least I'm healthy.
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