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


bunzilla

Recommended Posts

bunzilla Newbie

I'm new to this so any help is much appreciated. I was diagnosed with DH about ten days ago by having a biopsy on my arm and bloodwork. I did begin eating gluten free even prior to test results. I was given a perscription for dapsone with instructions to start with 3 a day and work my way up each week to a total of 6 a day (25mg. each). Even before I started the dapsone I noticed improvement in my rash. I have had no new blisters since. No itching, redness or anything. OMG what a relief after 8 Mo. of suffering

So, i'm due to increase the dapsone to 4 a day and I'm wondering if it's nessesary. I don't like to take any more than I have to but was wondering if I need to build up my immunity with increased doses, or, since I have no new symptoms, I could level off the dosage or maybe even decrease it?

thanks,


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



Celiac.com Sponsor (A8-M):



FranDaMan Apprentice

I won't pretend to be a doctor or even too knowledgeable in this area as I was diagnosed with DH just last month. I do know I'm on 100mg per day and the results have been very good. On the other hand I did have to request from my doctor a blood test due to the side effects. No sense getting something worse if a change in diet will fill the bill.

Welcome to the forum. I'm sure others will be along soon with more/better information.

Franceen Explorer

I had Dapsone (75 mg/day and increasing too) when I first was diagnosed and it did help. However when I got to 100 Mg the side effects nearly killed me. I had Hemolytic Anemia very badly and my liver enzymes went haywire and I got very sickly. Then my skin started to fall off!

I immediately quit the Dapsone and found that I was using it as a crutch to not be as gluten-free as I should have been - I had not been worrying about hidden Gluten (e.g. malt flavoring in cereal) or cross contamination. Once I could no longer take Dapsone I became very obsessive about Gluten Free eating and about ingredients etc. I have only had some minor glutenings (always from restaurants) in the past 3 years and have not TOUCHED Dapsone.

Dapsone can be a very very nasty drug and can really send your blood and liver in a whirlwind. So, I believe that diet is the best cure for DH. And it has worked for me. No more all over itching and scabs and feeling like flees are running all over my body. No more "leather skin" from Cortisone creams.

IT'S ONLY FOOD! So avoiding Gluten is my prescription since that awful Dapsone event!

Good luck. I would try to stay off of Dapsone as much as possible and ask your Dr. about the side effects and ask to have your blood tested frequently for anemia and liver problems if you stay on it. You can Google "Dapsone" and get a lot of info about the drug from some very reliable government and university sites.

lovegrov Collaborator

I'm not a doctor nor a medical person. But I did take dapsone for 20+ years (not knowing anything about celiac and the connection). I never took more than 50 mg a day and to me 150 mg sounds like a lot. My personal opinion -- and once again I am not your doctor or a medical person -- would be that if you're getting better on the gluten-free diet and 75 mg, there's no real reason to increase the dose. The worst that would happen is that more blisters will appear and then you'd up the dose at that point. Not taking more is not going to make you deathly ill.

If your doctor isn't having you back for blood tests and liver panel, he needs to, although I don't remember how long you should wait. Your goal, of course, is to go completely gluten-free and get off the dapsone. I did.

richard

num1habsfan Rising Star

I've been on Dapsone for a few years already (don't remember the exact time that I started). Always been on a 50 mg dose (half a tablet). And the few times that I've ran out of my prescription I've noticed it flare up as if I'd been glutened! Otherwise it definitely helps control all of the symptoms (as long as I'm not glutened).

  • 2 weeks later...
bunzilla Newbie

update:

I took the dapsone for about 3 weeks total. I was doing so good I went from 75 mg. a day to 50 mg.

after 5 days I had a minor outbreak. Two blisters on my elbow and a couple on my rear end. I went back to 75 mg. and the second day I started to feel really fatigued, especially around 2 hours after taking it. The next 2 days it became progressively worse and I began to have psychotic side effects.

It came and went, but I felt like a zombie. Anxiety, staring off into space, very fatigued. It may seem odd but I would find myself just staring at my hand, or a corner of the ceiling, in some kind of altered reality state. I decided that the blisters and itching would be better than feeling like this! I quit the dapse. and it still took 3 days to get back to feeling normal. So far so good, I know I have no crutch to rely on now and must stay 100 % gluten-free. I haven't had any new outbreaks so far.

Thanks to everyone for the input.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,170
    • Most Online (within 30 mins)
      7,748

    piloc39217
    Newest Member
    piloc39217
    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

    • ValerieC
      Does anybody know of a guide that ranks reevaluates universities and colleges in terms of their accommodation of celiac disease or food allergies?   Thanks in advance for any leads! Valerie 
    • thejayland10
      thank you, i have been doing that the last few weeks and will continue to do so. I had not had my ttg iga checked since I was diagnosed 14 yrs ago so I am not sure if they ever dropped below the 15-20 range.    all my other labs are completely normal but I am concerned that this may be signs of refractor celiac or something else since I'm so careful with gluten-free diet 
    • Scott Adams
      Around 9% of celiacs cannot tolerate any oats, even gluten-free oats. It might be worth eliminating them for a few months, then get re-tested.
    • thejayland10
      I only eat certifed gluten-free products but a lot of which are processed. Could there be trace gluten in those or is that very unlikely? 
    • Scott Adams
      For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes (you may want to avoid oats):    
×
×
  • Create New...