Dh - Dapsone, Outbreak And Infection

[oligold]

Hello everyone. I'm 19 and kind of worked out by process of elimination when I was 15 that I had some form of gluten intolerance; however, having briefly flirted with a gluten-free diet, I soon resumed a regular pattern of eating whatever I really fancied.

Last year, when revising for my A Levels, I developed an intolerably itchy rash that basically stretched over both my forearms. I went to the doctor, received a steroid. Rash receded, and then very quickly would break out again even worse. This pattern continued and continued with stronger and stronger steroids, until I began to experience itching on my hands (particularly on the back of the hand and the outside of my fingers), down my bottom, the back of my legs and below my ears.

At this point, I began a full-time gluten free diet and started University. The rash mostly cleared up, although I occasionally suffered from itching when I drank a beer or something like that.

However, when I returned home from University for the Christmas holidays, the rashes flared up dramatically once again - intense itching, red raw skin - until I went on holiday and they calmed down. Subsequently returning to University, the rashes remained largely calm, with (again) occasional itching.

When I returned home over Easter, however, the itching and the rashes became inordinately worse. Despite gritting my teeth and really trying to avoid any scratching, my arms and bottom broke out in an horrendous rash which, after seeing the doctor AGAIN, a dermatologist said showed DH-like symptoms. At the same time, the rashes continued to worsen, and I ended up suffering with two different infections in both arms which resulted in my entire left arm and shoulder feeling bruised upon any movement.

Though my biopsy was negative, the dermatologist nonetheless started me on a 2-week course of Dapsone to test my response to the treatment (and also because of the DH-like symptoms, my gluten intolerance and the fact that I had been on a gluten-free diet at the time of the biopsy). I started the Dapsone having just returned to University, and my arms cleared up very quickly. My gluten-free diet is far stricter than before (no more beer, I very rarely eat out, my food is pre-prepared gluten-free) and all seemed to be working well.

I finished the 2 week course of Dapsone, and the next day left University to return home to see the dermatologist. I took a blood test at the hospital with an appointment the following day. That night, having not taken Dapsone for 24 hours, I experienced a return of the itching, albeit not of the same intensity and without a red-raw rash. However, after sleeping at home, I woke up the next morning to discover that not only had the rashes returned on my hands, fingers, butt and arms, but the infections too - both arms were swollen, bright red, with puss-filled sores. Because of this, I'm now on another 2 week course of Dapsone (as well as a ton of antibiotics) and I'm having to see the dermatologist in a fortnight again.

So, if you're still reading after what feels like a stupidly long and boring story - what I really want to know is: could a 24-hour break from Dapsone truly cause the rashes to return in such force? Or does this all sound very strange?

Any further advice on treatment etc would be massively appreciated - and thank you for reading!

Oli

[pricklypear1971]

Well, I wasn't on Dapsone but I have read that symptoms can start receding 2 hours after your first dose-which leads me to believe it could come back just as fast.

As far as infection goes - it may not be infection. It may just be the DH lesions themselves which can get huge, blistery, and ooze like your skin is weeping. The weeping is usually clearish-yellow but I've heard some have puss. Also, I had general swelling and inflammation - one chicken s$#& doctor wouldn't come near me for fear of MRSA. It obviously wasn't MRSA. Let's put it this way - I was on the couch in a sleeveless nightie with my arms up and ice packs packed all around my arm pits. And I would just grind my teeth and try not to scream. It hurt to move at all, felt like I had the flu plus blisters.

DH can evolve - not only can it creep it can change from one type of lesion to another, ESPECIALLY when you come off steroids. Mine had a complete personality change post-roid.

So, as far as helping you deal....

Obviously, Dapsone works as long as you don't have nasty side effects. Most people with DH have a secondary issue other than gluten that exacerbates the rash - iodine is probably the most common as well as salicylates. If you have other food intolerances - dairy, corn, soy that can trigger it too. Chemicals, scents, MSG can do it...the list goes on. Things will settle down once you are gluten-free for a while but it can take up to 2 years for some.

As far as pain management goes, I recommend ice packs as often as you can. Keep the sores moisturized with a gluten free lotion. I prefer Vanicream. Sometimes I slap Vaseline on there when I have big scabs. Baby your skin - DH loves to come back if it's irritated. Some people have luck with topical pain meds like Orajel, etc. Don't use NSAIDS. Use Tylenol.

Most people with DH need to be careful about topical gluten - so screen your shampoo, etc. Sometimes you also need unscented stuff - keep it gentle.

If you want to know more about iodine google "thyca" for a low iodone diet. Same for salicylates. They're tougher - ask for help. Read through the DH section here for help.

And vodka is a great gluten-free, sal free, iodine free remedy. Drink it, don't put it on your rash. Just don't drink too much - newly gluten-free people tend to have off the wall drunk episodes (I speak from experience).

[squirmingitch]

I couldn't have said it better than Prickly. And be sure to read the "sticky" or pinned thread at the top of the dh forum! That will tell you how it's been documented that dh changes it's MO.

[itchy]

Oligold: First of all, it appears you are coeliac, so you will be unable to eat gluten containing food for the rest of your life, even if your dermatitis herpetiformis symptoms disappear with Dapsone or other treatment.

I've never used Dapsone, but it is my understanding that DH symptoms reappear very quickly when you stop using it, just as your experience has shown. Dapsone IS NOT a treatment for DH or coeliac. It only interfere with the process which results in the itchy lesions. Even taking Dapsone, you still have DH, and therefore you are coeliac.

Besides not wanting to expose myself to the side effects of Dapsone I decided not to use it because I didn't want it to mask any reactions I was having to hidden gluten. I was able to do this because my lesions were mostly in unseen places and weren't unbearable (though certainly extremely unpleasant).

And you are right to be very strict about the gluten. Improvements will only come with a strict diet. It can take weeks of even years. It has taken me almost three years, though improvement came in the first few months, and the past year hasn't been too unpleasant.

A couple of hints: take photos of your skin for future reference and to persuade future doctors who may disbelieve your condition.

Regarding other treatments, I suggest you read a lot of back posts in this forum. There are many different approaches and not everyone is the same. For example I am not sensitive to skin contact with gluten, nor iodine in my diet, or other factors, but some others are.

[Di2011]

All our usual great members have everything pretty much covered above - thank you lovely ladies!

1. Salicylates are one to keep an eye out in future too. Like iodine, salicylates are another contributor to our DH problems. Bookmark this page for future reference:

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2. Are you getting the liver (etc) test done that can show adverse reaction to Dapsone? You absolutely must google and learn about Dapsone and side effects. You are young and relatively healthy so you don't want to go messing with your major organs without regular checks.

[Di2011]

Sorry I should have said: 'like iodine, salicylates CAN BE a contributor'

[oligold]

Thank you very much - that is all immensely helpful! I'm back on a 2-week course of dapsone and the rash has already receded, but I definitely want to discuss in further detail with my doctor what the potential implications of the drug could or can be...

[squirmingitch]

oligold, there are other drugs besides Dapsone. None have been shown to be AS effective as Dapsone but when people can not tolerate or don't wish to take the chance with Dapsone; other drugs have been effectively used. Every drug will have it's downside but if you can't stand the dh until it gets better......

Here are some links so you can read about the other options available.

In this first one you have to scroll down to "Bullous Dermatoses" where it lists dh.

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