When Will Dapsone Start Working?

[ChemistMama]

I started my dapsone today. I have my bloodwork script, so I'm set there...I'll go in for my 1st bloodwork next week, then weekly for a month, biweekly a few times, then monthly. My derm. is very thorough! Right now I'm starting on 50 mg/day.

For those who've taken it, how long before it 'kicks in' ? I"ve been gluten-free for almost 3 months (with one major glutening when I was told to try a gluten challenge...never again, it took a week for it to get out of my system!) and was starting to heal, very, very slowly.

I'm also watching for side effects, since they are pretty scary. Has anyone experienced these? I wasn't going to go on Dapsone, but I"ve had very bad and intensely itchy lesions since November and would like to get them healed up. If I have no side effects, I"m planning on staying on it for awhile then tapering off so I don't have to take it long term.

Thanks in advance!

[bunzilla]

My dermatologist said it would work reltively quickly, as little as five to seven days. I have heard of some people takeing it without any problems. I was doing great for a couple weeks then began to feel fatigued about 2 hours after taking it. After 3 weeks on 75 mg. I was a zombie. I decided the itch would be better than the dapsone reaction, and the itch was horrible.

I decided I had to tighten up my gluten-free diet. It has been up and down, but I think it is going the right direction.

I believe the less drugs the better but I fully understand your desire to lose the itch.

There were nights where I would lock my hands together in an effort to keep from itching, because, as you are probably aware, one itch could lead to scratching like a madman.

Somewhere on this forum I saw a report of a man who took dapsone for twenty years with little or no problem.

Eveyone is different in how they react I guess.

Good luck with the dapsone, my opinion is the sooner you can get off it the better you'll be in the long run.

[tsryder]

My dermatologist used dapsone to confirm I had DH when the biopsy of a couple rash spots came back inconclusive. It is true that different people react differently to this drug.

Before taking the drug I was regularly going for 4 mile runs. After a month of increasing dosages from 50mg to 100mg, my stamina was reduced to maybe 4 minutes of jogging. I couldn't walk up a set of stairs without feeling fatigued. I didn't realize what was causing this problem, until I started looking into the side effects of dapsone.

I was not responding to 100mg after one month, so the doctor upped the dosage to 200mg. At that point my fatigue became chronic and I started doing my own research on DH. Thanks to sites like this, I found that maintaining a gluten free diet was the only known non-drug way to deal with the disease.

After attending a wedding reception where I'd had many beers (high in gluten) and even at 200mg of dapsone my skin rash worsened, and I decided to go gluten free.

I told my dermatologist about what I'd read regarding removing gluten from the diet and his response was "Good luck! There's gluten in everything" He also believed my fatigue was not caused by the drug, but instead my own reaction after having read the side effects. The problem with that is my experience with fatigue occured weeks before I knew that fatique was a side effect to the drug.

At that point I told myself "Well fxxx it then! I'm going gluten free and stopping this drug immediately" I went to the doctor a week later and nearly all rash was gone. He said, "Your rash is gone". I told him what I'd done and he said to stick with it and if necessary we could supplement the diet with dapsone.

Two weeks later I was still nearly rash free and went for a 4 mile jog with no problem!!!

I have been dapsone free now for 8 months. I do still get a rash if I eat anything containing gluten, but it clears very quickly if I stick to my list of known foods. I'm back to being fully active.

I have not gone back to that dermatologist since the week after he told me "Good luck" about going gluten free.

It is possible thanks to sites like these and the many food producers who are sensitive to the condition. There are even plenty of gluten free beers available. I would suggest limiting your diet to only those items you are 100% sure are gluten free. Introduce other foods cautiously and don't fully trust food labels (or get a list of gluten synonyms, because although an ingredient list might not include wheat, rye, barley, etc..., there are other names for gluten) Even be careful of things like vitamins. Check on everything before you ingest it!!!

My final advice is to consult with your dermatologist, but also be sure that you take ownership for your condition. I was miserable with the itching as well and the thought of being on dapsone for life was emotionally debilitating.

Good luck!!!

[ChemistMama]

My final advice is to consult with your dermatologist, but also be sure that you take ownership for your condition. I was miserable with the itching as well and the thought of being on dapsone for life was emotionally debilitating.

Thanks! My derm. and I are in agreement; a strict gluten-free diet plus dapsone for a few months to clear things up. Then gluten-free for life. I was cooking gluten-free for my son who has celiac for the last year, so it wasn't such a stretch to continue for me. I am super strict about gluten after seeing my son so sick! I have awful lesions which I'd like to get cleared up before summer.

Dang, if it slows my metabolism down I won't be on it long either!! I"m trying to lose #25 and if this makes me too sluggish I"ll give it up.

So far, my newest lesions are gone, but the older ones are still hanging around and itchy. So far no major side effects except I get a little jittery for 1/2 hour after I take my dose. It's been only 4 days, and I'm on a low dose, so we'll see. I have blood tests this week and a derm. checkup in a month, and we'll take it from there.

I've heard about people on long-term dapsone; in some cases it was because years back doctors didn't equate DH with celiac, so they told patients that they could eat gluten because the dapsone cured the skin problems. Unfortunately, those same people now have to deal with years of intestinal damage. Thanks for the info!