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Positive Dx for DH but Dapsone not helping?

Ginny757

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Ginny757 Newbie
Ginny757
Posted

Hi everyone- so glad to find this forum! 

I've had a skin biopsy & blood test both positive for celiac/DH. Went completely gluten free 14 days ago- believe I have been 100% but have probably made a few mistakes since I'm so new to it.

Started Dapsone 8 days ago. I keep reading that it should give immediate relief but that hasn't been the case for me. Started at 50mg- no improvement. Dermatologist bumped it up to 100mg 4 days later- felt maybe 15% better. But no improvement since & in fact feel worse- I am miserable actually.

Has anyone experienced this? Do I need a higher dose of Dapsone? Has anyone done oral prednisone while giving the Dapsone time to work? I am using topical Triamcinolone which doesn't really help- although it gets worse if I skip it.

Am also starting to wonder...could it be something else too? With a positive biopsy & blood test I'm sure I must have celiac...but this outbreak & diagnosis were completely out of the blue with never a single previous symptom at age 47.

Any advice appreciated- thank you!

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squirmingitch Veteran
squirmingitch
Posted

Gee Ginny, that's awful weird. I've never heard of anyone taking Dapsone where it didn't work. Very puzzling. I don't know what to tell you. So odd. 

I can say that oral or injected steroids  can really help put the rash in it's place - out of sight, out of mind - BUT there's a huge price to pay & that comes in the form of a backlash from hell when you stop the steroids. I don't know if anyone has ever had steroids while on Dapsone though and what effect the Dapsone may have on preventing the backlash -- that is IF the Dapsone finally kicks in for you.

Hopefully someone will come along who has experienced something like your situation. 

ravenwoodglass Mentor
ravenwoodglass
Posted

You have only been gluten free for a couple of weeks and it can take some time for DH to heal.  Make sure to check your topicals for gluten ingredients. Gluten can't be absorbed through intact skin but your skin is not intact and gluten ingredients in shampoos lotions etc. could be a problem. Also be sure to read the Newbie 101 thread at the top of the coping page to make sure you are doing everything you need to do to keep safe.

Many with DH find that avoiding iodine for a while helps us heal faster. I just avoided iodized salt for a while but some also avoid high iodine foods like shellfish too.

I have taken a short course of prednisone for DH before diagnosis. In my case a decreasing 10 day dose would give me relief for a couple months before it would return.  Since I was still eating gluten DH would of course come back.  I don't know if a short course would give you relief while the antibodies clear or not.

I do hope your doctor ran liver panels on you before prescribing the Dapsone and that he continues to monitor those levels frequently while you are on it. It can be quite toxic to the liver and some celiacs have liver impact from the celiac.

I hope you heal quickly. I know DH can be hell on earth.

elefky Apprentice
elefky
Posted

I was diagnosed with DH 21 years ago.  I don't remember exactly how long it took to heal.

As the previous poster said, avoid iodine.  If you use salt, do not use iodized salt.  Avoid shellfish.  Make sure you are eating 100% gluten free.   Be very careful.  Even now, I don't always know what I am reacting to because the reaction is not immediate.   But my reactions are much less severe when I do react.

Good luck.  Stick with the diet

Di2011 Enthusiast
Di2011
Posted

I abide by all the previous comments. It doesn't seem to be commonly shared on here but for me gluten avoidence is in any crumb. Shared kitchens, equipment, plates, cutlery.. All have been a day.. week.. (Sometimes more) of itching, digestive upanddown and sleeplessness etc! If you can't figure out your problem .. Rethink - where is the source. Not just what you have eaten. Think about who with and where you have eaten.

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      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
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