Jump to content

  • 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 For Dh

mtdawber

By mtdawber
in Dermatitis Herpetiformis

Recommended Posts

mtdawber Apprentice
mtdawber
Posted

I'll apologize up front if this has been posted before. I couldn't find anything that helped me on the DH part of the board.

I go back to the Dermatologist on Wednesday and my DH is not any better.

In fact, even though I've been researching like crazy, freakeshly cleaning my kitchen, using a different toaster and not eating anything unless I'm 110% sure, I'm worse!!!! :angry: I even checked my toilet paper, went to gluten free shampoo, conditioner and soaps, etc.

I "feel" bettter on the inside but I "feel" worse on the outside. I might be a little less itchy and I seem to be sleeping a little better because I'm not up in the middle of the night as often to scratch (or for other reasons) but I'm hugely broken out all over and the blisters just keep on coming.

What do you think about Dapsone? I've read good and bad about it. Can you help me with your personal experiences, thoughts, etc? Does it / did it work for you?

My husband thinks it's worth a try. I'm still trying to decide. Your help would be appreciated. :unsure:

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

Celiac.com Sponsor (A8-M):


happygirl Collaborator
happygirl
Posted

Hey Tanya,

Here are some potential links that *might* help a little bit:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

I don't know if I 'had/have' DH. I had an itchy sore on my leg that wouldn't heal that I dismissed (as it was the least of my problems), and it magically went away after being gluten free. I've never had it again, so I don't have much real life experience to offer. However, it seems from what I have read on here, that your experience is not that uncommon.

Best of luck and I hope the itching goes away SOON!!!!!!!!!!!!!!!

Laura

lovegrov Collaborator
lovegrov
Posted

Severe problems with dapsone are uncommon and will be caught quickly and reversed if you have the regular blood tests, especially when you start up. I took it for more than 20 years. At the very first my white blood cell count went crazy but was fine after we dropped the dosage. You whouldn't be taking it for more than several months, probably a year at the most.

richard

mtdawber Apprentice
mtdawber
Posted
  • Author

Ok, thanks for the feedback. I guess tomorrow, I'll get the prescription and take it from there.

Lola B Rookie
Lola B
Posted

Did you decide to go with the Dapsone, and if so, how's it working for you?

mtdawber Apprentice
mtdawber
Posted
  • Author

I did decide to give the Dapsone a try. I have to do weekly blood tests for the first month. My hemaglobin is on the low side of normal so I'll have to watch that it doesn't drop any more than it has...

I started on Friday so it's been 5 days. So far I have very few new blisters (any new ones are on my head). I am less itchy and my scabs are starting to heal. I think I'm improving a lot faster than I was just by eating gluten free. Don't get me wrong, the gluten free is keeping my insides feeling much better and I have no plans of changing my diet. The dapsone is just helping to clear up my outsides :D

I am tired but I'm not sure if that is because of the Dapsone or just being low on iron.

Bottom line is my skin is looking better so I am happy. Hopefully it heals up soon and the itchy goes away completely! :rolleyes:

Thanks for asking.

henrietta Newbie
henrietta
Posted

Thank you for posting about dapsone and DH, I am reasonably certain I have this skin problem as for the last few years I have had identical symptoms to the photographs found elsewhere on the site.

I have the lesions on both arms, shoulders, and now it has spread to my legs.

They start as itchy red places, drive me insane with burning heat and itching, then progress to reddened thicker scaley lumps that take months to go leaving a dark red scar. Several just won't heal ever.

Lately they have increased despite my sticking to a glute free diet, I am mostly avoiding wheat and I supect the odd bit of gluten I get is the culprit. If anything being more careful has increased the skin problem!

I have an appointment to go back to the skin specialist who several years ago dismissed them as "itchy lumps" and was going to ask about dapsone.

I am torn between being fed up with the skin problems but scared I will feel ill if ask for it.

I would appreciate you keeping me informed via here if you have any improvement or problems.

good luck, I hope it helps you.

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

Celiac.com Sponsor (A8-M):


lovegrov Collaborator
lovegrov
Posted

What you're describing sounds more like psoriasis to me, so you might ask about that as well.

richard

Michi8 Contributor
Michi8
Posted

Sounds like psoriasis to me too. However, some psoriasis sufferers do find that a gluten free diet helps their flareups.

Michelle

  • 2 weeks later...
mtdawber Apprentice
mtdawber
Posted
  • Author

I went to the dermatologist again this week. He upped the Dapsone to 50 mg which I am tolerating with no problem and there are no new spots... :lol::lol::lol:

I am seeing the ones I have slowly heal. Things are looking up.

Good luck with your diagnosis. Let us know how it turns out.

Archived

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

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


  • Member Statistics

    • Total Members
      131,675
    • Most Online (within 30 mins)
      7,748
    Kimmber
    Newest Member
    Kimmber
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.