Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Dapsone
0

13 posts in this topic

if my skin condition eventualy goes away when im on dopsone for a while will i still have to go gluten free

0

Share this post


Link to post
Share on other sites


Ads by Google:

if my skin condition eventualy goes away when im on dopsone for a while will i still have to go gluten free

Yes. If you do not, when you stop taking Dapsone the DH will come back. You will need to be gluten-free from now on. That is the only way to keep your DH under control. Some people keep eating gluten while on dapsone, but then in the future have the GI issues of celiac and corresponding complications(stomach problems, osteoperosis, problems from not absorbing nutrients).

0

Share this post


Link to post
Share on other sites

Yes you need to be gluten free and now. Celiac can effect your whole system in ways you most likely couldn't even imagine. It can increase you risk of some types of cancer, lymphoma for one, mental illness, you can develop brain lesions that will make it hard to walk, you can develop issues with your liver, gallbladder, arthritis well the list goes on.

Dapsone is also not a risk free drug and you want to be on it for as little time as possible. The ideal is to forgo the dapsone and just do the diet strictly as that alone will heal you.

0

Share this post


Link to post
Share on other sites

If you stop taking dapsone the Dh will come back. I took dapsone for 20 years but the celiac caught up with me (I had never heard of celiac and didn't realize what the DH meant), putting me in the hospital for 11 days and costing me more than 10 weeks of work. You don't want to go there.

richard

0

Share this post


Link to post
Share on other sites

if my skin condition eventualy goes away when im on dopsone for a while will i still have to go gluten free

I could not get dapsone here in Spain (after 15 years on Dapsone). I was panicking. Eventually i was prescribed "colchicine houde" but this made me very, very ill. So i stopped taking it! It has been four months now since i took dapsone, the skin rash has not come back and i feel well. I am still worried that it will return, but so far so good. I am glad to be off sulphapyridine and dapsone after many years, over 40 altogether. One doctor on a UK website said that this can happen and for me i

0

Share this post


Link to post
Share on other sites




You should go gluten free now instead of causing you more pain and suffering later. I started getting DH at age 12, 40 now, No one coule ever diagnose it they had no clue. I asked to be tested for in in 2006, finally figured it out then did the blood test and was positivly diagnosed with celiac disease, I started dapsone at 100 mg a day and spent about 3 months gluten free then reverted back to the old ways of eating while contiuing with the dapsone, May 2009 10 days in the hospital in ICU with an allergic reaction to dapsone, basically my blood was not allowing oxygen to bind, I was dying. No more dapsone for me then to tetracycaline and niacin, could not tolerate the niacin, still eating gluten, then to sulfasalazine, now my blood test come back thinking I am an ederly person whose kidney's are failing so they may be who knows. Now gluten free again for a week, small break up started yesterday made toast (udi's bread) in the house toaster. I just went out and bought a new one. So now there is absolutely no other medication I can take other than not letting 1 little mg of gluten enter my body unless I want to break out.

So start Gluten Free now and from experience save the pain and hardship. It is hard to eat glutenfree but the products that are now available so much outweigh what was available even 3 years ago. Your choice just offering my experience.

GOOD LUCK!!!

0

Share this post


Link to post
Share on other sites

I was told that I could come off the Dapsone after 6 months to a year of strict gluten-free diet, does that sound right? Is it really going to take that long for the GFD to kick in?

0

Share this post


Link to post
Share on other sites

To the OP:

Dapsone does not cure celiac disease & if you have dh, you have celiac disease PERIOD! As long as you continue to eat gluten then you are destroying your villi. There are no 2 ways about it. You can get Hashimoto's Thyroiditis, anemia from malabsorbtion, neuro issues, gluten ataxia, pain in your body like you wouldn't believe, as well as the other things that have been mentioned.

Dapsone masks dh, that is all. If you keep eating gluten then the second you come off Dapsone you will return to dh. The idea behind Dapsone is to give you relief from the dh until you have been gluten-free long enough to get most of the antibodies out of your skin.

tealiemonster, all of the med literature I have seen says 2 years on Dapsone & even then you will have some dh but it's supposed to be bearable by then. It's not the gluten free diet that has to kick in ---- it's the antibodies have to get out of your skin & that does require a strict gluten-free diet. We are all individuals & therefore no one can truly say..... "tealiemonster, it will take you X time on Dapsone & you will no longer have dh outbreaks". Not even the doctor. Sorry; it just ain't true. That could be better determined down the road if your dose of Dapsone is decreased & your dh continues to be controlled by the decreased dosage. Then a guess could be more easily made as to how long overall you will need to continue on Dapsone.

0

Share this post


Link to post
Share on other sites

so do you think if I am ascribing to a GFD I can taper off the Dapsone now and it would potentially not come back? That would be very cool.... I imagine prolly not though -_-

0

Share this post


Link to post
Share on other sites

so do you think if I am ascribing to a GFD I can taper off the Dapsone now and it would potentially not come back? That would be very cool.... I imagine prolly not though -_-

WOW. . . you responded quickly to Dapsone! I've been on it since 10/20/12 and still have lesions/blisters. The Dapsone has made my symptoms tolerable. I've also been gluten-free from the same date. I can tell when I've eaten gluten (by error) I have blisters come back and itching but they seem to resolve in a week.

0

Share this post


Link to post
Share on other sites

Yeah I feel like I am one of the lucky ones, low dose too. Maybe you need to up ur dosage? I would figure you'd have more relief by now! I am very new to all this but maybe the clobetasol propionate and Elidel I've been cramming into my skin for the last 15 years kept me from having the disease as deeply manifested in my dermis

0

Share this post


Link to post
Share on other sites

so do you think if I am ascribing to a GFD I can taper off the Dapsone now and it would potentially not come back? That would be very cool.... I imagine prolly not though -_-

tmonster, You could try it & see. I doubt you will stay clear for long but you never know. If your doc says you can go back on it when you need to. But remember what I said? About the dh can present whenever it darn well pleases gluten-free diet or no UNTIL ALL THE ANTIBODIES ARE OUT OF YOUR SKIN. Example: I was doing real good. Been strict gluten-free from Dec. 1, 2011 & in July/Aug. of 2012 I was almost completely clear of ANY dh. First week of Sept. 2012 & I began to have an outbreak like gonzo & it continues to this very day. And there isn't a snowball's chance in hell that I got glutened or cc'd. It's just "spontaneously presenting". This is the vexing thing about dh.

0

Share this post


Link to post
Share on other sites

I don't think my PCP wants to up the dose of Dapsone. I am diabetic and maybe that has attributed to the lesions not healing as quickly. I know I've had the blisters break out for at least 30 years at different times and just think that with my low immune (NH Lymphoma) the DH just went wild this year.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,090
    • Total Posts
      920,307
  • Topics

  • Posts

    • Hi, No, I do not have celiac  disease. I have an ankylosing spondylitis which is an auto-immune disease provoking an inflammation of the joints. Under the advice and supervision of my doctor and the professor at the hospital I follow a gluten free & casein free diet, which is extremely successful in preventing inflammatory events. And I've been doing so, strictly, for more than 6 years. So I'm not Celiac, but I can tell you that I react strongly every time I take gluten even in small amounts. Even soya sauce, which according to this website has an almost zero dose of gluten, is a lot too much for me. Nevertheless I allow myself to eat food which has been processed in a factory which processes gluten. To conclude, I would say that when you are travelling, especially in a country where celiac disease is scarcely known, you should be twice as careful as when you're going out at home. In the end you can never guarantee that the cook has cleaned his pan after using soya sauce and so on... You can only bet
    • Along those lines, many Americans are now pursuing gluten-free eating. Gluten ... Diagnosis of celiac disease typically requires a history and physical ... View the full article
    • No!  Once you fill the tub, if you sit in it for 3 minutes or you stay for 10... It doesn't change the amount or cost of the water.  That's only relevant if you have 3 kids to cycle thru that same water.  Is your hub bathing in the same water after you? Lol  And even if you add some more hot and stay longer....well...it's much cheaper than perscription meds, vodka or a substance that is legal in a few states.     Of course this only pertains to those of use with running water.... If you make your hub haul water from the creek or well and heat it over a fire....
    • Whether it is bona fide dermatitis herpetiformis, or severe eczema or hives or what have you, we all want to know how to stop the incessant itching.  Through all my research, the solution comes down to one thing: a good long soak in the tub-- with baking soda or Epsom salts or some kind of herbal tea, followed by a rub down in thick expensive lotion.  I don't know about you, but I was brought up to "get in, get done get out."  A long soak in the bath was a frivolous luxury, and a waste of time and hot water.  So now I'm having this awful breakout from forgetting to read a label and got wheated.  And every night I've been soaking in a baking soda bath to relieve the itching and aid my recovery.  And it's been hard! (But it's been very helpful too)  It has been hard to reconcile this "frivolous luxury and waste of time" as medically necessary!  Fortunately I've had no judging, and only support from my husband, who has had a similar upbringing.  Does anyone else struggle with this?
    • His son, Eli, had been misdiagnosed with celiac disease, so the family tried some gluten-free foods. After adding quinoa (KEEN-wah) to their diet, ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • HappyMom623

      I have Tangled problem! I want all the things Rapunzel Related....including Flynn Rider 😂 but seriously. I have like 8 shirts I want.
      · 0 replies
    • AprilBeth2013

      RT @MarkDever: “But the work is God’s and we do not fear the final results. ‘The heathen shall be given to His Son for His inheritance,’ .…
      · 0 replies
    • silk

      I have celiac disease and have been gluten-free for almost 10 years.  I am extremely sensitive to gluten, noting that I react within 15 minutes of contact and in fact the doctor suspects that there may also be an actual wheat allergy at play but have never bothered to be tested since I avoid it like the plague!  I am curious to know if anyone else reacts to flax or inulin?  My symptoms with those two are almost identical to gluten so I have to really watch for that in gluten-free breads and baking and recently discovered after the fact that flax was in the juice I was drinking. I know that people with gluten issues can have other problems as well and in fact I also avoid milk products.  Even after 10 years, and although it has become a way of life, it's still frustrating to have to read every ingredient on every label.😞
      · 2 replies
  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,114
    • Most Online
      1,763

    Newest Member
    3boymommy
    Joined