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Dapsone Intolerance Is Fixable?

mshaw

By mshaw
in Dermatitis Herpetiformis

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mshaw Newbie
mshaw
Posted

I'm newly diagnosed with DH and had a nasty reaction to the Dapsone (total body rash that was just as itchy as the DH, just no blisters). Gluten free it is but no relief from the DH other than Mother Nature taking her sweet time. So I just saw an allergist for the first time this morning and he informs me that he can desensitize me to the Dapsone. It'll involve an 8-12 hour stay at the clinic while I drink some solution (presumable sulfa based) every hour and get tested and monitored constantly. He says I can then go back on the Dapsone to get some relief from the DH rash. He also says that I will need to stay on the Dapsone regularily. If I go off of it for even a few days I'll need to get "re-desensitized".

Anybody gone through this? Does it work?

-m

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frenchiemama Collaborator
frenchiemama
Posted

Bleh. No I haven't done that. Dapsone makes me very sick, I don't think I would be willing to go through the process described. Why don't you try an alternate treatment first? Try 500mg of tetracyline and 500mg of vitamin B3 2-3 times per day. It works for me, and in combination with clobesetal (sp) ointment I was very comfortable until my gluten-free diet took care of the DH.

teebs in WV Apprentice
teebs in WV
Posted

m,

I've been having a skin reaction to dapsone as well (rash all over - it itches in some places, and doesn't in others). I've also had attacks of hives sporadically. I just went to my derm. this past week and we think it is due to my sulfa allergy (duh). Although he said that people who are allergic to sulfa can typically tolerate dapsone. Anyway, I have been taking claritin daily and it definitely has helped with the rash and itching. I'm going to continue trying the dapsone because I went off of it for 2 days and immediately started getting blisters. I've been gluten-free for 5 months now and have become fanatical about it. I was hoping by now I could start going off the dapsone but it doesn't look like I am ready yet.

Hang in there!

mshaw Newbie
mshaw
Posted
  • Author
...Why don't you try an alternate treatment first? Try 500mg of tetracyline and 500mg of vitamin B3 2-3 times per day.....

I've heard or read in a few places that Flaxseed Oil helps with the rash alot - ever tried that one??

Tx. - m

mshaw Newbie
mshaw
Posted
  • Author
...Although he said that people who are allergic to sulfa can typically tolerate dapsone...

That sounds a bit off - I had several pals with medical backgrounds and my derma guy all make it sound plain that sulfa allergies and dapsone don't go together. My allergist (just started seeing him) also thought that since I've just recently gone gluten-free and had such dramatic changes in my diet that my immune system is possibly a bit confused right now, and that my sensivity to sulfa (and sulfites too) may be temporary. He's a bit on the homeopathic side of things and came highly recommended.

Could it be that the very doctors we turn to for help are also a source of conflicting information??

Tx. -m

frenchiemama Collaborator
frenchiemama
Posted
I've heard or read in a few places that Flaxseed Oil helps with the rash alot - ever tried that one??

Tx. - m

Nope, never tried flaxseed for the DH. I would really look into the tetracycline + B3 though, it really works for some people. My dermatologist said that she has used tetracycline for other skin conditions (pemphoid? is that it?) and it works for that, and she was amazed by how well it worked on my DH.

  • 3 weeks later...
Franceen Explorer
Franceen
Posted
Nope, never tried flaxseed for the DH. I would really look into the tetracycline + B3 though, it really works for some people. My dermatologist said that she has used tetracycline for other skin conditions (pemphoid? is that it?) and it works for that, and she was amazed by how well it worked on my DH.

I just started 200 Mg of Dapsone per day. Previous 100 Mg worked for a while and then stopped when I had a Gluten-FEST. Now, after 3 days of the 200 Mg, I have a different kind of rash in a couple of places (underarms, crotch, wrist and middle of shoulder blade on one side), also itchy but not blisters that break easily, just little white bumps under skin that are hard. Don't know the cause of it, but suspect Dapsone. Also noticed my urine has gotten pretty dark in color (orangey).

Still miserable with the DH itch though, even after increased dose for 3 days. Still Gluten free since the gluten-fest I went on when traveling.

Patiently awaiting Biopsy and blood test results.

If they are positive I may ask to try the sulpha drug and then the tetracycline/B3, if my Dr. will go along.

If they are negative, I'm back to square ONE.

Franceen

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Franceen Explorer
Franceen
Posted

Just me adding info:

The blood work was negative for all 3 things (all DH/Celiac related). Biopsy results not back yet.

I was MOSTLY gluten-free except for a 6 day trip to Hawaii, 3 weeks prior to biopsy. Do you think the neg bloodwork was neg because of that? Also will the biopsy be a "good" one while taking Dapsone and trying to be gluten-free? I'm so afraid they will tell me "you have nothing wrong with you - it's all in your head - here take some more Prednisone!".....HELP :angry:

quote name='Franceen' date='Apr 2 2006, 06:55 PM' post='122140']

I just started 200 Mg of Dapsone per day. Previous 100 Mg worked for a while and then stopped when I had a Gluten-FEST. Now, after 3 days of the 200 Mg, I have a different kind of rash in a couple of places (underarms, crotch, wrist and middle of shoulder blade on one side), also itchy but not blisters that break easily, just little white bumps under skin that are hard. Don't know the cause of it, but suspect Dapsone. Also noticed my urine has gotten pretty dark in color (orangey).

Still miserable with the DH itch though, even after increased dose for 3 days. Still Gluten free since the gluten-fest I went on when traveling.

Patiently awaiting Biopsy and blood test results.

If they are positive I may ask to try the sulpha drug and then the tetracycline/B3, if my Dr. will go along.

If they are negative, I'm back to square ONE.

Franceen

  • 5 months later...
mshaw Newbie
mshaw
Posted
  • Author

I'm the original poster of this thread. I've been off the forums for several months so I thought I would give an update on my Dapsone intolerance.

I tried the tetracyclene and vitamin B approach - helped a little but not enough. In the end I did go through with the treatment from the allergist to remedy the sulfa intolerance. The treatment took about 6 hours total. I started with 1mg oral dose of the medication - some kind of solution. Tasted a bit like cherry kool-aid. Then they doubled the dose each time - it progressed from 15 minutes to an hour betwen doses. I took a little over 1000mg all said and done. I had BP and cardiac checks every 30 minutes - no problems there. The short answer is that IT WORKED. The treatment itself was no big deal - it was boring if anything. The allergy clinic had a room with a TV and a huge leather recliner for people that go through this - so I was comfy too.

The procedure was called a "Rapid Desensitization". It took a couple months to find an apothacary that would make the medication. Turned out there was a place right in town that did it.

Following the treatment, I took 200mg of the dapsone daily for a couple months to get rid of the rash - it's finally gone completely. I'm on a progressively lower dose these days - down to 50mg/day right now.

One catch - I can't go off the dapsone completely or I will become sensitive to it again. It is possible to go through the treatment again as well but it seems more practical to just find the lowest dose that keeps the DH at bay.

My insurance paid for it too - my out of pocket was only $25.

Definitely a good thing for me to do - I have no regrets at all. :D

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