Stopping Dapsone Question...

[Metoo]

I have been on dapsone since January...and have tried 2 times to stop...at which point my rash blew up and the nightmare rash came back!  one of those times included eating out...which should have been gluten-free but may have been cross contaminated.

I have been ultra strict for more than month now.  This weekend I forgot my dapsone (was on 50mg)....I noticed I wasn't itching, just slight when I get hot, which was the same on dapsone.  I still have visible rash.  But I am on Day 4 now of no dapsone just slight itching and I still have rash.  But its not spreading. 

Does anyone have experience with going off dapsone?  I would like to quit it, I am very hopeful right now, I could live like this!  Just curious if anyone had any experience with going off that went something like this.  I thought I would have to wait for the rash to totally go away before I could go off, otherwise the horrible itching would return. 

[apprehensiveengineer]

I have not taken Dapsone, and cannot provide any experience with regard to any potential side-effects coming off it. 

Here are some things that have helped me. People with DH appear to be more sensitive than "regular" celiacs, so an extra layer of caution may be required to get rid of the rash:

1. Don't eat out.

2. Don't eat food that you have not prepared yourself in a clean environment.

3. No oats, even those labelled gluten-free.

4. Limit high iodine foods (seafood, table salt, dairy) temporarily until rash fades.

5. Follow a dietary protocol similar to the Fasano diet (no processed foods, gluten-free or otherwise). After rash is under control, consider adding foods back in, taking note of effect on rash.

Even if all these things are done, the rash could still take a while to go away completely. I have seen a big improvement in the last few months after really bearing down and doing the things I've listed. I do still get some sporadic "breakouts" in response to being cc'd, but much better than before.

 

[disgruntledceliac]

On 5/16/2018 at 1:40 AM, apprehensiveengineer said:

I have not taken Dapsone, and cannot provide any experience with regard to any potential side-effects coming off it. 

Here are some things that have helped me. People with DH appear to be more sensitive than "regular" celiacs, so an extra layer of caution may be required to get rid of the rash:

1. Don't eat out.

2. Don't eat food that you have not prepared yourself in a clean environment.

3. No oats, even those labelled gluten-free.

4. Limit high iodine foods (seafood, table salt, dairy) temporarily until rash fades.

5. Follow a dietary protocol similar to the Fasano diet (no processed foods, gluten-free or otherwise). After rash is under control, consider adding foods back in, taking note of effect on rash.

Even if all these things are done, the rash could still take a while to go away completely. I have seen a big improvement in the last few months after really bearing down and doing the things I've listed. I do still get some sporadic "breakouts" in response to being cc'd, but much better than before.

 

I just want to echo this. I have a persistent case of DH that wont' go away despite being nominally gluten free for a couple years. (I've been on dapsone a while too.) I've adopted the principles above - including the Fasano diet - and I've seen significant improvement in the past month.

It is a lot of extra work, but if you're serious about getting better I recommend staying away from food you don't prepare yourself, stay away from processed food (even if it says "gluten free") and stick to the foods highlighted by Fasano.

Be well!

[disgruntledceliac]

I've written about this before but it is relevant here, so apologies for the repeat info. I was diagnosed with celiac/DH for over two years ago, but despite going gluten free I continued to have DH issues. I figured it would go away with time, but it didn't. Started taking Dapsone, but the rash still wouldn't go away.

Two months ago I started the Fasano diet. No DH flare-ups since then. I feel much better ... for the first time in years I'm feeling optimistic about things.

The Fasano diet isn't the easiest thing in the world, as it requires dedication. Your food choices will be limited. But it is entirely worth it. They say after 3-6 months most people can go back to a normal gluten free diet, as the stomach will be healed. I'm looking forward to that! In the meantime I'm enjoying not having DH for the first time in a decade, and my energy level has gone up noticeably.

Also remember that you must avoid cross-contimination at all times. I have my own mini-fridge as well as a small convection/toaster oven to achieve this. Again, it is a little inconvenient at first, but I can assure you that it is worth it when you stop getting DH.

So my advice is to try the Fasano diet for 3-6 months. Keep taking Dapsone as instructed by your doctor. After 3 (or 6) months start trying the "regular" gluten free foods and see if your stomach is healed.

Best wishes to you, and let me know if you have questions.