12 replies to this topic

[hippo33]

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

[ChemistMama]

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).

[ravenwoodglass]

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.

[lovegrov]

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

[declan]

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´m glad that it did.

good luck

declan

[Nickie]

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!!!

[tealiemonster]

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?

[squirmingitch]

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.

[tealiemonster]

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

[sisterlynr]

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.

[tealiemonster]

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

[squirmingitch]

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.

[sisterlynr]

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.