Effects, and side effects, of Dapsone

[statguymark]

Hello all. I've had the appropriate blood and urine tests and I should pick up my Dapsone prescription later today. Please share your experiences about how quickly the drug might help me, and especially what side-effects I should watch out for.

I know that I must have more blood tests, weekly at first, then bi-weekly. 

And what have you done with your diets, after you started taking Dapsone.

Your thoughts are appreciated.

mark s

[Rogol72]

Hey @statguymark,

Welcome! Dapsone is a double edged sword. It does actually work very quickly depending on the dosage, within a few hours to 24 hours depending on how active your DH is. I believe it only stops the itch from an active DH flare up. The TTG antibodies will still remain in your system/dermis until they dissipate over time with a strict gluten free diet.

The side effects of Dapsone ... it can cause hemolytic anemia and essentially breaks apart your red blood cells prematurely. It also artificially lowers your Ha1C. There are case reports of Diabetics on Dapsone who have to go on alternative therapy because of this . I'm not diabetic, but my Ha1C was 21, when it should be in the normal 35 to 39 range (UK/IRL measurements). I have normal blood sugar of 5.6, so the two numbers didn't add up. I had to do the glucose challenge because of this, thankfully it was negative.

Don't be tempted to cheat a little here and there when the Dapsone begins to work. Maintain a strict gluten free diet and try to get off it as soon as you can.

And be careful of getting too much dietary iodine as it can cause or exacerbate DH flares, and renders Dapsone ineffective.

The Canadian Celiac Association have a webinar on DH and how Dapsone works ... https://www.youtube.com/watch?v=PAdmsNiyfOw

 

Hope this helps.

[statguymark]

Thank you very much. I appreciate the link, and I will check it out.

[statguymark]

On 10/12/2022 at 5:05 AM, Rogol72 said:

Hey @statguymark,

Welcome! Dapsone is a double edged sword. It does actually work very quickly depending on the dosage, within a few hours to 24 hours depending on how active your DH is. I believe it only stops the itch from an active DH flare up. The TTG antibodies will still remain in your system/dermis until they dissipate over time with a strict gluten free diet.

The side effects of Dapsone ... it can cause hemolytic anemia and essentially breaks apart your red blood cells prematurely. It also artificially lowers your Ha1C. There are case reports of Diabetics on Dapsone who have to go on alternative therapy because of this . I'm not diabetic, but my Ha1C was 21, when it should be in the normal 35 to 39 range (UK/IRL measurements). I have normal blood sugar of 5.6, so the two numbers didn't add up. I had to do the glucose challenge because of this, thankfully it was negative.

Don't be tempted to cheat a little here and there when the Dapsone begins to work. Maintain a strict gluten free diet and try to get off it as soon as you can.

And be careful of getting too much dietary iodine as it can cause or exacerbate DH flares, and renders Dapsone ineffective.

The Canadian Celiac Association have a webinar on DH and how Dapsone works ... https://www.youtube.com/watch?v=PAdmsNiyfOw

 

Hope this helps.

Thank you for that link to the webinar. I'm about halfway through and it's good background information, but a little too technical for me. I will finish it slowly.

I am very lucky to have gotten near instant relief from itching after taking Dapsone for the first time. I'm still staying gluten free and I know that I must have a series of ongoing blood tests to make sure Dapsone is not having a negative impact on me.

Thank you again.

statguymark

 

[Rogol72]

1 hour ago, statguymark said:

Thank you for that link to the webinar. I'm about halfway through and it's good background information, but a little too technical for me. I will finish it slowly.

I am very lucky to have gotten near instant relief from itching after taking Dapsone for the first time. I'm still staying gluten free and I know that I must have a series of ongoing blood tests to make sure Dapsone is not having a negative impact on me.

Thank you again.

statguymark

 

You're welcome. I'm glad it's worked for you. People with DH are generally more sensitive to small amounts of gluten that most Coeliacs.

[statguymark]

On 10/12/2022 at 5:05 AM, Rogol72 said:

Hey @statguymark,

Welcome! Dapsone is a double edged sword. It does actually work very quickly depending on the dosage, within a few hours to 24 hours depending on how active your DH is. I believe it only stops the itch from an active DH flare up. The TTG antibodies will still remain in your system/dermis until they dissipate over time with a strict gluten free diet.

The side effects of Dapsone ... it can cause hemolytic anemia and essentially breaks apart your red blood cells prematurely. It also artificially lowers your Ha1C. There are case reports of Diabetics on Dapsone who have to go on alternative therapy because of this . I'm not diabetic, but my Ha1C was 21, when it should be in the normal 35 to 39 range (UK/IRL measurements). I have normal blood sugar of 5.6, so the two numbers didn't add up. I had to do the glucose challenge because of this, thankfully it was negative.

Don't be tempted to cheat a little here and there when the Dapsone begins to work. Maintain a strict gluten free diet and try to get off it as soon as you can.

And be careful of getting too much dietary iodine as it can cause or exacerbate DH flares, and renders Dapsone ineffective.

The Canadian Celiac Association have a webinar on DH and how Dapsone works ... https://www.youtube.com/watch?v=PAdmsNiyfOw

 

Hope this helps.

 

[statguymark]

Unfortunately, I had a serious side effect from Dapsone so I am no longer taking that drug. My blood oxygen content was lowered by Dapsone. My oximiter (that thing you put on the end of your finger) was measuring in the low 90's and it should be (and has been) in the upper 90's. So I stopped taking Dapsone on the advice of my doctor. And I feel better.

Questions for the group:

1. Do any of you do something like a "cheat day" with gluten? That is, do you purposefully decide to ingest some gluten once in a while? If so, what are the impacts on you?

2. Where do you go for professional advice? Can you find a dietician that is knowledgeable about celiac? That seems like my next step.

Any advice would be appreciated.

Statguymark

[Rogol72]

2 hours ago, statguymark said:

Unfortunately, I had a serious side effect from Dapsone so I am no longer taking that drug. My blood oxygen content was lowered by Dapsone. My oximiter (that thing you put on the end of your finger) was measuring in the low 90's and it should be (and has been) in the upper 90's. So I stopped taking Dapsone on the advice of my doctor. And I feel better.

Questions for the group:

1. Do any of you do something like a "cheat day" with gluten? That is, do you purposefully decide to ingest some gluten once in a while? If so, what are the impacts on you?

2. Where do you go for professional advice? Can you find a dietician that is knowledgeable about celiac? That seems like my next step.

Any advice would be appreciated.

Statguymark

Having a cheat day is never ever worth it. The longer you are off gluten, the more sensitive you become to smaller amounts. 

I've gone to a Dietitian at the hospital where I was diagnosed with DH, and the Dietitian affiliated with our Coeliac Society. They do offer good advice, however they don't know everything and it's better to speak to a dietitian who has celiac disease themselves who has first hand experience of living with celiac disease. Tackling vitamin and mineral deficiencies caused by malabsoprtion is important to feeling well long term.

Some others may chime in with their experiences.