Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Dapsone Fail

kmag

By kmag
in Dermatitis Herpetiformis

Recommended Posts

kmag Rookie
kmag
Posted

Tried Dapsone for six days to see if it would help, but could not take the side effects. If it's even possible, I was actually itchier on the meds, had numbness in hands and feet, insomnia some nights, zombie-like stupor most of the day. I would rather be itchy and have all my faculties working, thank you very much.

So there goes my trial of dapsone for a diagnosis plan. So, either the meds didn't work (not the right dose or didn't take it long enough) or it just isn't DH. I'm so frustrated!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Hopeful1950 Explorer
Hopeful1950
Posted

It sounds like you had a bad reaction to the Dapsone. Some people get a rash from it. How ironic, you are trying to treat a rash and you get one instead.

It is my understanding that if a DH patient can tolerate Dapsone, relief happens in 2 or 3 days. That was my experience. It took about three days, the itching was mostly gone and I started healing. It took about a month for all the bad side effects to kick in and force me to stop taking the drug.

Roda Rising Star
Roda
Posted

Why not get a biopsy for DH?

ravenwoodglass Mentor
ravenwoodglass
Posted

Dapsone can be a pretty toxic med. IMHO it was irresponsible of your doctor to give you a 'trial' as a form of diagnosis. See if you can get of biopsy done by a derm who is familiar with DH. They need to biopsy the area next to an active lesion not the lesion itself and the lab needs to be looking for DH. If you strongly suspect DH then the best 'med' for it is the diet. Some see a lessening of new lesions pretty quickly although you have to be very strict with the diet, including topicals, for the antibodies to leave the skin. Until those antibodies have left the skin it will take very little gluten to flare the rash but over time the breakouts will be less severe.

I had a really bad case and within 2 weeks gluten free I stopped getting new lesions and the ones I had were slowly healing. After 2 years gluten-free a breakout went from being the first glutened symptom to the point where I would only get a small blister or two that would heal quickly without leaving those lingering purple scars.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,467
    • Most Online (within 30 mins)
      7,748
    rene1130
    Newest Member
    rene1130
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Any Gluten-free Lipstick At Walgreens, Wal-mart, Etc?

      By Scott Adams · Posted

      Thanks for sharing this info! Frustrating to see companies who haven't used wheat as an ingredient start to do so! https://blistex.com/product/five-star-lip-protection/
    • Emily P.
      Any Gluten-free Lipstick At Walgreens, Wal-mart, Etc?

      By Emily P. · Posted

      As of July 2025, Blistex is no longer gluten free for their five star protection lip balm The last ingredient is WHEAT! From Blistex' website, ingredient list for 5 Star Protection;: "Inactive Ingredients: bis-diglyceryl polyacyladipate-2, bis-stearyl dimethicone, butyloctyl salicylate, C12-15 alkyl benzoate, calendula officinalis extract, caprylic/capric triglyceride, carthamus tinctorius (safflower) seed oil, cetyl dimethicone, citric acid, euphorbia cerifera (candelilla) wax, flavor, microcrystalline wax, myristyl myristate, octyldodecanol, oryzanol, ozokerite, panthenol, phenoxyethanol, sorbic acid, stearyl behenate, sucralose, tetrahexyldecyl ascorbate, tocopheryl acetate, triticum vulgare (wheat) germ oil"
    • knitty kitty
      Frustrated

      By knitty kitty · Posted

      I followed the Autoimmune Protocol Diet to get my symptoms calmed down and my nutrients up.   I know what a struggle it is.  You're why I'm here. Smoothing out some rough parts of your journey makes my journey worthwhile. Here's the tests you can get for Celiac antibodies...  
    • knitty kitty
      This Roller Coaster Ride Needs to Stop

      By knitty kitty · Posted

      @Ginger38, I'm with you!   I could not take Metformin.  I got so sick, constant diarrhea, abdominal cramps, extreme highs and lows, no energy, weight loss, muscle wasting.  Just horrible.   Metformin is known to block thiamine absorption.  Talk to your doctor about thiamine deficiency.  It's called Gastrointestinal Beriberi.  My doctor didn't recognize thiamine deficiency outside of alcoholism.  So I took over the counter Thiamine in the form Tetrahydrofurfuryl Disulfide and felt health improvement within an hour.  Magical!   I followed the Autoimmune Protocol diet to get my stomach calmed down and control my blood glucose levels without medication. Being diabetic, we lose more thiamine through our kidneys, and the Metformin on top of it and malabsorption from Celiac.  Talk to your doctor soon!
    • Jmartes71
      Frustrated

      By Jmartes71 · Posted

      Thankyou I will be seeing my new primary this coming Monday and will ask.I did ask about some other blood test to look for that I saw on this website.I pushed the second ANA panel two months ago thinking it would show but found out it doesn't.I don't have lupus which seems what the ANA panel seems to only look for.I have come to the conclusion that doctors are like hair people meaning all hair places know how to cut hair and style but not all know how to grow hair.I was given tramadel for nearly 20 years to push through. I literally can't no more and stopped taking tramadel since I was swelling slowly in the belly.I will diffently show new primary this website and hopefully he will help.Its so hard because im falling apart with my eye, skin and read every label and stay away from what Im not supposed to.I had SIBO test done and it died on me and didn't complete all 8 breathes just the 5.I spoke to np and was finally validated by word of mouth.Cone to find out I have to repeat again.I went to a reputable hospital to be let down.I have to redo breath test but want to do at hospital instead of at home so no issues.Its not pleasant drinking that glucose stuff and not getting a direct answer. I live in Northern Cali.What recommended gi would know about celiac  disease, really know because I thought I found one but didn't. I don't want to digest any wheat, dairy, peanuts, rye, barely, eggs,garlic, walnuts because I get sick.When i showed the reputable hospital my past food allergies i was told that test is old.My thoughts were i was made in 1971 and its still avtive with diagestive issues. 
×
×
  • Create New...