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Dapson
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so... i've been on dapsone over a year now... but about a month ago i got my blood drawn and my liver enzymes were elevated... so i went back to get it drawn again about 2 weeks later and the level was doubled from before... so i'm not allowed to take dapsone anymore, atleast until that level gets down again... and i've been off of it for four days and already i look as bad as before i even knew i had DH... huge rashes and blisters all over my back, face, chest, arms, scalp, and other areas... use your imagination. anyone know of anything i can do in the meantime? i can't sleep at night because it itches so bad, a couple nights ago i was up for 2 and a half hours in the middle of the night scratching til it bled so that it didn't itch anymore, it just stung from bleeding, and i could deal with that more easily. i've been taking benadryl the past 2 nights just because it knocks me out so bad that i can't stay awake anyway, but i've been tired all the time that i'm awake too because it knocks me out good... even taking half a pill at a time knocks me out. the dermatologist today prescribed me some other drug that starts w/ sulfa, there's about 8 more letters after that but i can't remember what it's called for sure, but no pharmicies in town carry it b/c nobody takes it, so it's gonna be days until i get that anyway. anyone know what I can do in the meantime? or if the other drug works? i just can't stand the itching and i don't wanna scar myself everywhere from scratching so much..... ahhhhhhh

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Unfortunately I know of only three things -- dapsone, the other drug you've ordered, and being completely gluten-free. But the gluten-free route takes a while. Are you gluten free? If not, you should be.

richard

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I've been gluten-free since november 2002... i mean i'm not perfect w/ the diet, i try so hard but it's like something seems to slip every now and then. i have celiac disease too, but i do'nt have as bad symptoms as some people but yeah i know when i mess up most times... as in tonight, the movie popcorn had something in it i think, haven't been feeling so great. but yeah.. i still break out

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As I understand it, if you're making even small mistakes too often, you'll continue to break out. Your only real solution is to get real strict about gluten. Also, for a while (but not forever) yoiu need to avoid iodine. This primarily means no iodized salt (kosher is OK) and no shellfish.

richard

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I know exactly what you are going through. I have had celiac disease for 22 years and was recently diagnosed with DH. It took them 6 months to do so. The derm I have been seeing has me on 100mg of dapsone. He also put me on prednisone for 12 days to get me over the hurdle. I found that sleeping with a frozen gel pack helped some, or cool almost cold showers helped also. The prednisone really helped me a lot. But the main thing is cross contamination. I was never aware of how much you can get. I am still breaking out even on the dapsone. But I have heard it takes quite awhile to remove all gluten from your system.

Hang in there it does get better.

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Hi,

I'm struggling with DH breaking out since i started taking estrogen, progesterone for menopausal symptoms. This time it broke out in my scalp. Never had it there before.

Wanted t tell you that FLAX oil pills help it to go away for a few hours and are without side effects except they loosen up ones stool.

Try one and don't be afraid to increase the dose to 2.

Hope it helps.

Elkris

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Thanks guys... I just went ahead and started taking my dapsone again until I get the other medicine in. Had to sign up for some study in New Jersey to get the medicine, but it's completely free that way anyway... but yeah i've been on dapsone for almost 2 years, what's another week... but man, it was amazing the difference when I stopped taking it, and also the difference since I just started taking it again 2 days ago. I broke out like THAT... had huge blister clusters all over my back and armpits, and my scalp was bad too... I couldn't sleep at night... I got to the point where I took a bath towel and put it on my bed so I could lay on it, that way if my back itched I just rubbed on it and the texture scratched all the itches at the same time... felt quite good for a couple seconds till the amount of itching became unbearable again... but just the fact that I slept on the towel w/ its texture did make it better... okay so maybe i'm weird for coming up w/ that but it helped a little bit... but i'm almost completely cleared up again (still itches but it's not nearly the same) but I do get the new medicine in a few days. Meanwhile I am going to get stricter on the diet.. if I go out to eat and I"m questioning something then i will get it more times than not. For instance I just found out the sauce on the enchiladas that I always get at a local mexican place had flour in it... and i eat there a lot. it was quite sad though, I asked the waiter, who didn't konw, and he got the manager, who told me the sauce was okay, then went back to the chef after that and found out that it wasn't and came and let me know right away.. but i've got that taken care of at least. well while i'm typing a book here i wanted to ask.. does anyone w/ celiac disease ever still get the abdominal discomfort even when they KNOW they are eating okay? Whenever my mom cooks dinner (i'm moving out in 9 days for college) she is SO careful with gluten, she doesn't even keep any in the house and all our meals are completely gluten-free, but I still get the discomfort after eating every now and then, just wondering if anyone would know why? I honestly feel sometimes that I was better off before i knew i had celiac disease in relation to that part. I never did get stomachaches or anything when I wasn't diagnosed, but I only get it now when i DO eat gluten-free. I don't know if that's because my intestines are okay now and are more sensitive because they're not getting the crap (no pun intended) pounded out of them by gluten and all... but i'm quite uncomfortable still. oh well... i'm probably gonna post this latter part again on another forum just b/c this forum is for DH only but if anyone has anything to say about that it'd be cool- thanks

jonathan

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I went to my dermatologist this morning and he was amazed that my DH was completely gone. He asked me if I was gluten-free and seemed amazed that I was. He was the one who told me the best cure for DH was to go gluten-free for life. In my experience, though, I have found out that a lot of creams, shampoos, detergents, etc. have such strong ingredients, that they affect my skin too. I found wheat protein in many sources. Have you ruled out everything that goes on your body? Sunscreens, fabric softeners, hair sprays and gels? I switched detergents and fabric softeners to the free and clear kind, I got rid of the shampoo with wheat, too. If your DH is so bad that you can't sleep and you're truly gluten-free, there must be something else affecting you. Good luck in college!

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A soak in a tub with Dreft, yes the baby clothes detergent it helpful. I only have a few blisters on my hands and lower arms... They seem to have gotten a bit worse after going gluten-free about 2 weeks ago. Not a bad case though... But I add Dreft liquid to a tub of water... its the best bubble bath in the world, cant take regular bubble bath. This stuff softens and eases the itching. It may be my imagination but it seems to heal them faster... Add about 1/2 capful to running water. Even if you dont have these, its glorious!

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    • I also only really eat one meal a day and always after I get home. I never really feel hungrey. I call it 'Pavlov's dog in reverse'.  I think it comes from so many years of food making me sick. I have gotten to the point where I now at least can eat a sandwhich and some fruit during the day but it wasn't a quick process. When folks get like that it is very important to make sure that one meal has a good amount of both calories and nutrtion.  If your diet is how you describe you are starving yourself.  You need to get yourself used to eating again.  What helped me was carrying a baggie with some nuts and dry fruit with maybe even a handful of gluten free pretzels and always some chocolate baking chips. I just ate couple pieces when I thought of it throughout the day. A little bit of cheese and a couple safe crackers, a piece of fruit or a small tin or individual serving snack pack are also good. You need to get some nutrition during the day so you can feel up to cooking a simple full meal  for dinner. I hope your feeling better soon.
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    • We don't delete accounts but can delete any personal information and change your screen name if you would like. Just send me a personal message with three possible screen names. For the record you can edit most things in your account area with the exception of your screen name.
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