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Meds For Dh - Dapsone And Others
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Initial skin biopsy (punch): eczema negative, puritic vesicle observed

Immunoflorescence IgA skin biopsy (punch): Weak Postive

Blood Serum Celiac Comprehensive Panel (Quest Diagnositics - Ttg, EMA & EMA Titers): Positive

Small Intestine biopsy (EGD): negative

(pictures from Oct 2012 - prior to biopsies, tests & Dapsone use)

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Looks a lot like mine me thinks ;) I was sucessful using clobetosol propionate to keep my itching low and the blisters controlled, but I was going through like 4-5 15mg tubes a month... on that high potency corticisteriod that's only supposed to be used 10 days at a time :/

Thanks for posting your pics it helps with my peace of mind... too bad it can't help with the gluten-withdrawl nauseous I have right now :(

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Looks a lot like mine me thinks ;) I was sucessful using clobetosol propionate to keep my itching low and the blisters controlled, but I was going through like 4-5 15mg tubes a month... on that high potency corticisteriod that's only supposed to be used 10 days at a time :/

Thanks for posting your pics it helps with my peace of mind... too bad it can't help with the gluten-withdrawl nauseous I have right now :(

can you do lactose products? yogurt and kefir are great for nausea and stomach discomfort, and, if not loaded with sugar, etc., have great pro-biotic effect. also, ginger tea.

and, yes, your rash looks a lot like mine.

.... moneek

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I was able to post my photos to photobucket .... unfortunately, they are in reverse order, the first ones, the majority of the pix, are from December 2012; the last ones are of the initial manifestation of the rash back in July 2012, plus a few in between from November, when I actually thought I was getting a bit better. take a look:

http://s1272.beta.ph...lamb/library/DH

My case is complicated by a Dx of Hashimotos during the same time period (August 2012), so I have this conflict regarding Iodine - it appears dietary Iodine can aggrevate the DH rash, but Iodine is needed for healthy thyroid function. So, I am trying to balance all of this and learning more every day.

I use no cosmetics at all, with the exception of gluten-free lipstick (Gabriel's), I lubricate the rash with a combination of pure coconut oil and borage oil lotion (shikai children's lotion, gluten-free, per the manufacturer: http://pics1.ds-stat...g/75483/300.jpg )

I'm also avoiding the majority of gluten-free food products out there - they are loaded with corn and tapioca and lots of ingredients that I have never heard of. I am eating mostly whole foods, fruits, veggies, meats, chicken, etc.

Best of luck to everyone.

M

So sorry for the loss of your home! I believe when I become anxious the remaining lesions itch more. I have pics on photo bucket too, in past postings.

Your earlier photos are so much like my rash. I broke out severely on 3/1/12 and started Dapsone & gluten free on 10/20/12 without a diagnosis. You can look at my photos and history on the forum. When I saw your outbreak from July, I cringed remembering the sting, burn and itch. I am 100% gluten free but when I eat out I'm finding I'm getting cc, especially when I have corn tortilla's that evidently are prepared with flour foods. :( The majority of my lesions have healed to the purple stage with rough skin. I haven't posted my Mar pics but did post pics after a month on Dapsone. The lesions were still quite bad but with tolerable symptoms. Good luck with following the diet and as cleared as you are responding to being gluten-free, Dapsone would probably clear you very quickly. You will receive good advice from the members that have been on here for quite some time. . .

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So sorry for the loss of your home! I believe when I become anxious the remaining lesions itch more. I have pics on photo bucket too, in past postings.

Your earlier photos are so much like my rash. I broke out severely on 3/1/12 and started Dapsone & gluten free on 10/20/12 without a diagnosis. You can look at my photos and history on the forum. When I saw your outbreak from July, I cringed remembering the sting, burn and itch. I am 100% gluten free but when I eat out I'm finding I'm getting cc, especially when I have corn tortilla's that evidently are prepared with flour foods. :( The majority of my lesions have healed to the purple stage with rough skin. I haven't posted my Mar pics but did post pics after a month on Dapsone. The lesions were still quite bad but with tolerable symptoms. Good luck with following the diet and as cleared as you are responding to being gluten-free, Dapsone would probably clear you very quickly. You will receive good advice from the members that have been on here for quite some time. . .

How long were you [or are you] on Dapsone? any side effects? I am leery of that drug.

best wishes.

moneek.

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How long were you [or are you] on Dapsone? any side effects? I am leery of that drug.

best wishes.

moneek.

I started the Dapsone on Oct 20, 2012. I started the gluten-free diet on the same day. I have had monthly blood test and have had no problems. In fact, I was anemic/ low iron and it was normal on my last labs. I was expecting faster results but I could feel a difference in the intensity of the itch, sting, burn within 3 days. I am scheduled to see a new Dermatologist in Feb to have light therapy too. I was to the point that I literally begged my PCP to allow me to try the Dapsone. She was most concerned that my blood was already low and I could possibly need a transfusion. I told her. . . hey, that's ok . . had blood transfusions during chemo and I'd rather have a transfusion than to continue to itch so badly! I'm due back for a check up next week. She only prescribes a month at a time so I HAVE to check in with her. . . . :rolleyes:

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I started the Dapsone on Oct 20, 2012. I started the gluten-free diet on the same day. I have had monthly blood test and have had no problems. In fact, I was anemic/ low iron and it was normal on my last labs. I was expecting faster results but I could feel a difference in the intensity of the itch, sting, burn within 3 days. I am scheduled to see a new Dermatologist in Feb to have light therapy too. I was to the point that I literally begged my PCP to allow me to try the Dapsone. She was most concerned that my blood was already low and I could possibly need a transfusion. I told her. . . hey, that's ok . . had blood transfusions during chemo and I'd rather have a transfusion than to continue to itch so badly! I'm due back for a check up next week. She only prescribes a month at a time so I HAVE to check in with her. . . . :rolleyes:

that's encouraging about the relief you got from Dapsone; I will find out on Wednesday if the MDs think it's appropriate for me.

Happy 2013!! I hope it's a better year than this one was.

...m

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Yes, I have it bad. I see a new dermatologist from University S Florida on Dec 6th. I see my PCP this coming Tues. I really am healing. :) The ones from my wrist to elbow have healed and just have dark spots, no itch. From my elbow to shoulder is trying to heal but I keep taking off the scabs. Not really itching there but feel the dryness. The lesions on both knees have healed just leaving discoloration. The sole of my right foot has healed completely. I guess just the stomach, back, buttocks, chest and scalp still have sensations. Like sitting here, I am aware that my skin feels tight and I could scratch my belly BUT I can control the urge. Dapsone has not taken that away completely with 2 a day = 50. It is so hard not to pick at my scalp :( the skin is really rough with scabs. I see such great improvement. Thankful for that!

My family keeps reminding me how much better I am. They have been so patient with me during the past 10 months, helping me apply the ointments to my back.

I've decided to eat at home unless there is a special occasion so I can know for sure, what I am eating. Thank you so much for your advice and response. :)

I only eat at home as well after getting cross-contaminated twice (I think so, anyway); it's difficult socially as most folks just don't really understand. They think, just a little bread, just one cookie, or whatever. I find it's easier to just be a bit isolated at the moment until I feel stronger.

.... m

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My case is complicated by a Dx of Hashimotos during the same time period (August 2012), so I have this conflict regarding Iodine - it appears dietary Iodine can aggrevate the DH rash, but Iodine is needed for healthy thyroid function. So, I am trying to balance all of this and learning more every day.

Yep it is a balancing act for sure.... One I deal with on a daily basis ,

It does get easier in that you will learn how high or low iodine you need to be. And you begin to recognize the signs of when you need to cut back or add more . Me,, I push that limit to the brink everyday ( but I am like that :P:D )

It is interesting ( maybe a mute point but interesting just the same ) that I was also diagnosed with Hashimoto's within a month of my DH ( positive biopsy ) and my "official" Celiac diagnoses .

.In my case I had just plain had enough and INSISTED ( rather loudly I might add :angry: )that the doctors take me seriously and they did A LOT of testing ( probably just to shut me up :rolleyes: )

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    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
    • Hey guys, the last year and a month of transitioning to totally gluten free was hard, but I now seem to be healthy. The first six months I got horrible cramps that would suddenly come and hit hard, but I really havent seen any of those since about February-March. One thing that I wouldnt say has gotten better is my psyche. I was always sort of an anxious person (hard not to be when you dont feel well yet you have "IBS" and you're just "nervous", which all of you probably know), but I am borderline hermit now. I finally went to the doctor today and was prescribed prozac, so hopefully that helps, but I was just wondering about you guys? Thanks  
    • Thank-you, thank-you! I am so relieved to have input from others who have experience with celiac disease. I'm not sure what I'm going to do about the school cafeteria. I'll ask our very nice and experienced Cafe Mgr for realistic info and details. My primary concern is the safety of my daughter and packing a lunch will not be that big a deal, even though she prefers the fresh prep instead of lunchbox offerings. Sigh. It sounds as if the 504 is unquestionably the preference over the IHCP, since the 504 is binding and follows the student through his/her academic career. I have a meeting with the admin team on Tuesday. Until then, I'm reading lots so i can be informed. And, dkader, I sent you a private message via the blog's feature. I'd certainly love to read the 504 info you have squirreled away. Thank-you so much!
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