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Dapsone

bunzilla

By bunzilla
in Dermatitis Herpetiformis

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bunzilla Newbie
bunzilla
Posted

I'm new to this so any help is much appreciated. I was diagnosed with DH about ten days ago by having a biopsy on my arm and bloodwork. I did begin eating gluten free even prior to test results. I was given a perscription for dapsone with instructions to start with 3 a day and work my way up each week to a total of 6 a day (25mg. each). Even before I started the dapsone I noticed improvement in my rash. I have had no new blisters since. No itching, redness or anything. OMG what a relief after 8 Mo. of suffering

So, i'm due to increase the dapsone to 4 a day and I'm wondering if it's nessesary. I don't like to take any more than I have to but was wondering if I need to build up my immunity with increased doses, or, since I have no new symptoms, I could level off the dosage or maybe even decrease it?

thanks,

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FranDaMan Apprentice
FranDaMan
Posted

I won't pretend to be a doctor or even too knowledgeable in this area as I was diagnosed with DH just last month. I do know I'm on 100mg per day and the results have been very good. On the other hand I did have to request from my doctor a blood test due to the side effects. No sense getting something worse if a change in diet will fill the bill.

Welcome to the forum. I'm sure others will be along soon with more/better information.

Franceen Explorer
Franceen
Posted

I had Dapsone (75 mg/day and increasing too) when I first was diagnosed and it did help. However when I got to 100 Mg the side effects nearly killed me. I had Hemolytic Anemia very badly and my liver enzymes went haywire and I got very sickly. Then my skin started to fall off!

I immediately quit the Dapsone and found that I was using it as a crutch to not be as gluten-free as I should have been - I had not been worrying about hidden Gluten (e.g. malt flavoring in cereal) or cross contamination. Once I could no longer take Dapsone I became very obsessive about Gluten Free eating and about ingredients etc. I have only had some minor glutenings (always from restaurants) in the past 3 years and have not TOUCHED Dapsone.

Dapsone can be a very very nasty drug and can really send your blood and liver in a whirlwind. So, I believe that diet is the best cure for DH. And it has worked for me. No more all over itching and scabs and feeling like flees are running all over my body. No more "leather skin" from Cortisone creams.

IT'S ONLY FOOD! So avoiding Gluten is my prescription since that awful Dapsone event!

Good luck. I would try to stay off of Dapsone as much as possible and ask your Dr. about the side effects and ask to have your blood tested frequently for anemia and liver problems if you stay on it. You can Google "Dapsone" and get a lot of info about the drug from some very reliable government and university sites.

lovegrov Collaborator
lovegrov
Posted

I'm not a doctor nor a medical person. But I did take dapsone for 20+ years (not knowing anything about celiac and the connection). I never took more than 50 mg a day and to me 150 mg sounds like a lot. My personal opinion -- and once again I am not your doctor or a medical person -- would be that if you're getting better on the gluten-free diet and 75 mg, there's no real reason to increase the dose. The worst that would happen is that more blisters will appear and then you'd up the dose at that point. Not taking more is not going to make you deathly ill.

If your doctor isn't having you back for blood tests and liver panel, he needs to, although I don't remember how long you should wait. Your goal, of course, is to go completely gluten-free and get off the dapsone. I did.

richard

num1habsfan Rising Star
num1habsfan
Posted

I've been on Dapsone for a few years already (don't remember the exact time that I started). Always been on a 50 mg dose (half a tablet). And the few times that I've ran out of my prescription I've noticed it flare up as if I'd been glutened! Otherwise it definitely helps control all of the symptoms (as long as I'm not glutened).

  • 2 weeks later...
bunzilla Newbie
bunzilla
Posted
  • Author

update:

I took the dapsone for about 3 weeks total. I was doing so good I went from 75 mg. a day to 50 mg.

after 5 days I had a minor outbreak. Two blisters on my elbow and a couple on my rear end. I went back to 75 mg. and the second day I started to feel really fatigued, especially around 2 hours after taking it. The next 2 days it became progressively worse and I began to have psychotic side effects.

It came and went, but I felt like a zombie. Anxiety, staring off into space, very fatigued. It may seem odd but I would find myself just staring at my hand, or a corner of the ceiling, in some kind of altered reality state. I decided that the blisters and itching would be better than feeling like this! I quit the dapse. and it still took 3 days to get back to feeling normal. So far so good, I know I have no crutch to rely on now and must stay 100 % gluten-free. I haven't had any new outbreaks so far.

Thanks to everyone for the input.

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