Understanding Dermatitus Herpetiformis

[Guest pugsysmom]

Do you have to stay on dapsone to keep from getting the herpetiformis over and over again? I have been gluten-free for 1.5 years. When I finish a round of dapsone, two or three weeks later the dang stuff comes back and in more and more places. HELP!

[almostnrn]

I am not sure what your exact condition is, and right up front you need to know that I've never taken dapsone. I'm also making the assumption that you are completly gluten free. My DH flares when I get gluten in my diet or on my skin via shampoo, lotions, etc. The timing of which I've never been able to really figure out. For the most part it seems that for me it is rather delayed from when I've gotten glutened. But I do realize that everyone reacts differently. Once I went on the gluten-free diet it went away completly. I may randomly get A spot from time to time but its nothing like when I'm eating regular food. I wonder if the dapsone is causing you to have a "rebound" type thing when you go off of it. I personally will not do anything to hinder the DH because it is my warning sign that I've gotten off track with my diet or there is something hidden in a new product that I'm missing . I am hoping others will post on this too as I know some people have a much more severe case than I do so I can only offer advice from my perspective. I hope you can find a solution to your DH problem and find a way to get off of dapsone for good!

[gf49erfan]

I was on Dapsone for 4 years, until I "woke up" and figured out it was more than a rash, no doctor told me why I had the rash and what it was from, just said to take the pills.

I had it bad, knees, elbows, beltline, buttocks, but dapsone really helped, but I also had digestive problems, but didn't connect the two, so for years I just took dapsone.

In October 2005, after alot of intense research, I determined that my rash, well there was more to it.

Celiac is what I found, I found a good gastro dr. and "told" him what I wanted him to do, and to look for.

endoscopy, and full blood work, well January 30th 2006, I was positively diagnosed with Celiac, as my doctor put it "loaded with it"

I've been gulten free since, and have not taken dapsone at all, have had no flare ups at all, and feeling 110% better then I've felt in a long time

I don't like taking pills so that was part of my reason for my research, and no I don't have to

If you are totally gluten-free , and you were diagnosed with DH, and still have flare ups even while your taking dapsone, maybe it's something more or you need a stronger dosage.

I would try to get off of the dapsone, if at all possible and go gluten-free you'll feel soooo much better!!

[teebs in WV]

I have been on Dapsone for a year now. I take 75 mg a day and have tried numerous dosages - anything from one 25mg pill per day to finally taking three 25 mg pills per day (all at once). This seemed to be the magic combination for me - but as you both said everyone is different. I have tried to go off of it a few times and within 2 or 3 days of stopping I start breaking out. I have been gluten-free for a year now and we are very careful about cross-contamination.

Some experts believe that it can take up to 2 years for your skin to become completely free of whatever it is that causes the breakouts. There are a few people on this board that really know alot about this and I am sure they will comment.

Other things such as iodine and ibuprofen can aggravate DH as well. I switched to plain salt instead of iodized, and I only use aspirin for pain relief.

Good luck to you - I hope you are able to determine the right solution for your body.

Tracy

[almostnrn]

When you stop the dapsone and the DH rares its ugly head how long do you wait before starting back on it? I'm just curious if you wait it out a little while (and trust me I KNOW that is easier said than done) if it will start to clear on its own. Also another point I thought about over the weekend is that my dermatoligist told me peroids of high stress can also cause a slight outbreak as well. I have always taken this with a grain of salt because although she is a wonderful, highly regarded MD she also told me to just "take it easy on the wheat....you don't have to quit eating it all together". I guess it just goes to show how much ignorance there is about celiac and DH. I think the point about it taking a long time to completly clear is absolutely on target too...if it is a build up of antibodies in our skin that causes the DH, it would make sense that until that skin can has completly replaced itself without the presence of antibodies we could still have a small flare here and there.

[num1habsfan]

I've been on Dapsone for a couple of years now (dont remember when I started exactly). the only days I dont take it is when i'm no nauscious that i'm afraid i wont be able to keep it down (which happens quite often this year). i'm so sensative to dairy and ESPECIALLY gluten that even just the slightest bit of accidental contact will flare up DH. In fact when I feel no effect health-wise from contamination, my skin is always the proof i was in contact (even touching it). I have DH on all of my upper half of the body--from the waste up.

I tested myself this fall/winter to see if I can get away with taking it like maybe once every couple weeks (to see if i dont need it daily) and its gotten so much worse so I'm going back to once a day...

And yes, Dapsone DOES help me hugely. Its definitely improved it and killed that horrible itchy feeling!

~ lisa ~

[Ursa Major]

It's too bad some of you seem to need the Dapsone. Please make sure your doctor monitors your liver closely, as Dapsone, especially if taken for an extended time, can cause liver damage.

[almostnrn]

I'm so sorry for those of you who can't get your DH to clear, I just can't imagine it. I almost feel bad because mine does go away. Wish I could do something to help

[Pegleg]

I'm in the process of trying to take all wheat products out of my diet. It sure hard though. You seem to crave what you are allergic to. Wheat is in everything. It's pretty much a given that when I eat wheat, the first place it shows is on my face. My nose, 3rd eye spot, chin and fingers turn red and itchy. It goes away after I've stopped eating wheat for a few days, It also makes me puffy. I have scars on my chin from scratching. I do apply olive oil (straight from the bottle) at night. It takes some of the redness away and soothes also.