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Dapsone For Dh

mtdawber

By mtdawber
in Dermatitis Herpetiformis

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mtdawber Apprentice
mtdawber
Posted

I'll apologize up front if this has been posted before. I couldn't find anything that helped me on the DH part of the board.

I go back to the Dermatologist on Wednesday and my DH is not any better.

In fact, even though I've been researching like crazy, freakeshly cleaning my kitchen, using a different toaster and not eating anything unless I'm 110% sure, I'm worse!!!! :angry: I even checked my toilet paper, went to gluten free shampoo, conditioner and soaps, etc.

I "feel" bettter on the inside but I "feel" worse on the outside. I might be a little less itchy and I seem to be sleeping a little better because I'm not up in the middle of the night as often to scratch (or for other reasons) but I'm hugely broken out all over and the blisters just keep on coming.

What do you think about Dapsone? I've read good and bad about it. Can you help me with your personal experiences, thoughts, etc? Does it / did it work for you?

My husband thinks it's worth a try. I'm still trying to decide. Your help would be appreciated. :unsure:

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happygirl Collaborator
happygirl
Posted

Hey Tanya,

Here are some potential links that *might* help a little bit:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

I don't know if I 'had/have' DH. I had an itchy sore on my leg that wouldn't heal that I dismissed (as it was the least of my problems), and it magically went away after being gluten free. I've never had it again, so I don't have much real life experience to offer. However, it seems from what I have read on here, that your experience is not that uncommon.

Best of luck and I hope the itching goes away SOON!!!!!!!!!!!!!!!

Laura

lovegrov Collaborator
lovegrov
Posted

Severe problems with dapsone are uncommon and will be caught quickly and reversed if you have the regular blood tests, especially when you start up. I took it for more than 20 years. At the very first my white blood cell count went crazy but was fine after we dropped the dosage. You whouldn't be taking it for more than several months, probably a year at the most.

richard

mtdawber Apprentice
mtdawber
Posted
  • Author

Ok, thanks for the feedback. I guess tomorrow, I'll get the prescription and take it from there.

Lola B Rookie
Lola B
Posted

Did you decide to go with the Dapsone, and if so, how's it working for you?

mtdawber Apprentice
mtdawber
Posted
  • Author

I did decide to give the Dapsone a try. I have to do weekly blood tests for the first month. My hemaglobin is on the low side of normal so I'll have to watch that it doesn't drop any more than it has...

I started on Friday so it's been 5 days. So far I have very few new blisters (any new ones are on my head). I am less itchy and my scabs are starting to heal. I think I'm improving a lot faster than I was just by eating gluten free. Don't get me wrong, the gluten free is keeping my insides feeling much better and I have no plans of changing my diet. The dapsone is just helping to clear up my outsides :D

I am tired but I'm not sure if that is because of the Dapsone or just being low on iron.

Bottom line is my skin is looking better so I am happy. Hopefully it heals up soon and the itchy goes away completely! :rolleyes:

Thanks for asking.

henrietta Newbie
henrietta
Posted

Thank you for posting about dapsone and DH, I am reasonably certain I have this skin problem as for the last few years I have had identical symptoms to the photographs found elsewhere on the site.

I have the lesions on both arms, shoulders, and now it has spread to my legs.

They start as itchy red places, drive me insane with burning heat and itching, then progress to reddened thicker scaley lumps that take months to go leaving a dark red scar. Several just won't heal ever.

Lately they have increased despite my sticking to a glute free diet, I am mostly avoiding wheat and I supect the odd bit of gluten I get is the culprit. If anything being more careful has increased the skin problem!

I have an appointment to go back to the skin specialist who several years ago dismissed them as "itchy lumps" and was going to ask about dapsone.

I am torn between being fed up with the skin problems but scared I will feel ill if ask for it.

I would appreciate you keeping me informed via here if you have any improvement or problems.

good luck, I hope it helps you.

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lovegrov Collaborator
lovegrov
Posted

What you're describing sounds more like psoriasis to me, so you might ask about that as well.

richard

Michi8 Contributor
Michi8
Posted

Sounds like psoriasis to me too. However, some psoriasis sufferers do find that a gluten free diet helps their flareups.

Michelle

  • 2 weeks later...
mtdawber Apprentice
mtdawber
Posted
  • Author

I went to the dermatologist again this week. He upped the Dapsone to 50 mg which I am tolerating with no problem and there are no new spots... :lol::lol::lol:

I am seeing the ones I have slowly heal. Things are looking up.

Good luck with your diagnosis. Let us know how it turns out.

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