Experience with dapsone?

[Suzy]

Hi All,

I am going to take my first dose of dapsone tomorrow in the hopes that it will help my legs. I have the nastiest, most persistent vasculitis that is not only unsightly, but also causes painful bulges in my legs and feet. It sucks.

I am so desperate for relief that I'm risking taking this med even though I have a sulfa allergy, which I have been told will make me more likely to react to the dapsone. And when I "react" to a drug, my immune system goes into attack mode and tries to kill me (or at least that's what it feels like).

So basically, I am nervous and can't sleep. Does anyone have experience with dapsone?

Thanks,
Suzy

[eyeamdry]

Suzy, I hope you got some sleep and didn't have your immune system attack itself or anything else. 
I have not heard of dapsone, but will google it.  Lucy

[slccom]

My husband has the sulfa allergy, but has always been able to take the things that supposedly are going to cross-react. I hope the same is the case for you.
Sharon

[irish]

I looked the drug up on line because I could not find it in any of my nursing drug books.

I had heard of it and I think it is because I have given it one time for someone with a skin issue. I guess the main thing is to make sure that the doc does the blood tests that need to be done to monitor the liver and whatever else needs to be done---probably the blood counts.

It sounds like it can have some side effects but you and the doc both know what you have talked about and what the challenges, if any, there are. Since you have such a bad issue with the vasculitis this may be the med that will work. Good luck. Irish

[stephL]

Hi Suzy,

I was on dapsone for about 9 months. It's another anti-malarial that has anti-inflammatory properties and it can help interfere with disease progression. I hope you do as well as I did on it. I had absolutely no side effects and I felt so good on it, I felt like I was 20 years old again. No pain, no fatigue. It's was awesome. The only reason my doc stopped prescribing it is because my skin issues were completely resolved. I've asked my rheumy to prescribe it for me but unfortunately he isn't in favor of it.

Best wishes to you, StephL

[irish]

I thought I read that it was given for leprosy. Anyway, it does have more side effects than the plaquenil so I can see why a long term use unless absolutely necessary is the way to go. Irish

[Suzy]

Thanks, all. 3 doses and so far no reaction. I just feel really, really out of it. I take Lyrica, which can make me feel loopy, and it seems like this med is making it worse. I've also had a headache for the last 24 hours.

Steph, what were your skin issues? I pray this works. I read about it combined with colchicine as a treatment for vasculitis, so I asked my rheumy to try it. To your point Irish, I don't want it to be long-term because it's not great in combination with the other drugs I'm taking.

I will keep y'all posted.

Suzy

[stephL]

Suzy, I was treated for a form of Celiac Disease call Dermatitis Herpetiformis. (Not related to any infection, it's purely autoimmune). I'm glad to hear it's going well for you!

Irish, Dapsone is used to treat a number of infections including leprosy and acne, but also malaria, autoimmune related skin conditions, and believe it or not, brown recluse spider bites. It's really a wonder drug to have so many uses. It does carry more risk of side effects than Plaquenil. I'm not sure how it measures up to other treatments given for Sjs like methotrexate, etc, but I would love to hear more about it if anyone knows. 

[Suzy]

Just wanted to post an update on my experience with dapsone.

It did not help my vasculitis. In fact, I have had a very rough week with my legs. The last few days I started with swollen glands, chills and a lowgrade fever, so I stopped the dapsone today. Not sure if it was the cause of my flare, but it certainly wasn't helping. 

However, I found a doctor at Emory who has a specialty in dermatologic immunology. Hallelujah! My rheumy will have to write a letter on my behalf and send my labs to him, then the derm will review everything and decide if he wants to take my case.

Sometimes I just get so tired of fighting. But no one's gonna do it for me, so I gotta. 

Suzy