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Comparison Pictures Not Better, Worse. Maybe Healing.
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8272156328_556896a357_m.jpgDay One of Dapsone Nov 27th 2012

8271089149_bbc9e80115_m.jpg 12/14/2012 Left Hand, after shower, moisturized.

8272156276_de8a490d45_m.jpg12/14/2012 Right Hand, after shower, moisturized.

They are spreading out some are flattening out but I cannot call this a win, is this how it heals?

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It's really hard to say. We are all different. Yours presents more like my hubs presents. His does that flattening but spreading out thing. When his does that things do get a little bit better but the danged stuff hangs on so freaking long. His go from that to crusting then flaring again then crusting then they get better but there are these deep seated ?bumps/lumps? under the skin & they will hang on a long, long time (weeks) & they will let loose small bits of the clear amber fluid & in sunlight it looks like there's glitter on the places. Then it will finally reach a point where it's just a slightly raised but fire engine red area & it burns more than itches. That hangs on for a month.

I'm just trying to be honest with you. I wish I could say you will be healed in days from this point but you would know that for a lie as soon as a few days passed & you weren't healed. You look like you might be going into a crusting phase.

It's so hard to say what point you're at as we are individuals & our dh is as individual as we are.

I so wish I had a definitive answer for you! :(

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It's really hard to say. We are all different. Yours presents more like my hubs presents. His does that flattening but spreading out thing. When his does that things do get a little bit better but the danged stuff hangs on so freaking long. His go from that to crusting then flaring again then crusting then they get better but there are these deep seated ?bumps/lumps? under the skin & they will hang on a long, long time (weeks) & they will let loose small bits of the clear amber fluid & in sunlight it looks like there's glitter on the places. Then it will finally reach a point where it's just a slightly raised but fire engine red area & it burns more than itches. That hangs on for a month.

I'm just trying to be honest with you. I wish I could say you will be healed in days from this point but you would know that for a lie as soon as a few days passed & you weren't healed. You look like you might be going into a crusting phase.

It's so hard to say what point you're at as we are individuals & our dh is as individual as we are.

I so wish I had a definitive answer for you! :(

It's worse at night. SO MUCH WORSE. The Dapsone makes it HURT more than itch. It takes the itch down but then it burns, stings and I am generally white knuckling it all night. My skin is so pissed it wants it's steroids. I knew, I didn't care. I just have to ride this part out before I can find out what I am really reacting to. My legs hurt so bad and are so tight standing up is worse than a second degree burn right now. The skin is that tight. Bending over is hell. My skin LOVED the Eucerin Calming body wash. It smelled like fish oil, I almost gagged. Looked at the bottle, hmmmm Omegas you say....well I've bathed in oil before so. I may consider oil cleaning. Using Hibiclins to kill germs then literally bathing(showering no tub) in Olive Oil.

8274499614_b59b4078cd_m.jpgThis is my rt. thigh and leg right now. I am so swollen it's sick. It looks like months since I've seen moisture but it's been two? hours. I am that dry that fast. But it is that angry red you were talking about, and man does it feel angry.

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I do understand. Now I AM crying a river. :( I know it's painful as all get out. Yes, you have to ride out the withdrawal from the steroids. And it's going to be hell. How about coating down with plain old fashioned Vaseline?

I can't stand that you are going through this. Sorry; I have to cry.

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I'm not sure it's the Dapsone making the burning. When my hubs is at this stage he gets terrible burning. More burning rather than itching. He describes it as feeling like a cigarette is burning him.

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I've said this before, but honestly, when I see those pictures I know I have no right to complain about ANY of my symptoms. My sick stomach is nothing. My trips to the bathroom are nothing. My psoriasis is a piece of cake. Even my jaw pain is nothing compared to what you folks have to put up with. My heart breaks for all of you who have DH. :( I wish I had a magic wand that could make you all better.

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Just those beautiful words you wrote make us better bartful! Thank you. :wub:

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Ann, I'm so sorry. My body is completely affected accept my face, but not to the same extent. And it is absolutely life changing. just want to say I hear you.

But squirming you posted somewhere that raisins have iodine? Can't find it now but did I read that correctly? I'm pretty much living on raisins.

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Yes, I did & that used to be on the thyca.org list & that's why I wouldn't eat them but thyca changed the list somewhere along the line & now they are not on the list. Soooooo????????

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I'm not sure it's the Dapsone making the burning. When my hubs is at this stage he gets terrible burning. More burning rather than itching. He describes it as feeling like a cigarette is burning him.

maybe it is just night time and I take the Dapsone at night. It does help the itch some.

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/hugs thank you every one of you. People are even arguing this is Lymes, or a Brown Recluse rash it's pathetic people will not accept BIG AG did this to me not BIG PHARMA or a bug. My own family thinks I am fine and able to make a 20hr each way road trip to a funeral. Yes it's my last grand parent but I cannot do this. I am not fit to fly and certainly not fit to sit on this rash that long....I am not stressing over this and making myself worse. He was 94 he had a good run and my family is retarded. Again thanks to everyone who sympathizes it helps....so much.

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RE: Vaseline Nursery Jelly is what we found and it had a scent, that made me sick to my stomach. The doctor said Aquaphor and wanted me to bathe in it but it's $16 for a 1lb tub that will last a few days. So I am using Aquaphor on the obviously crusted parts. The Doctor gave me sample tubes. Hubs is using it on my back. I am also using Eucerin intensive repair(sticky and glopy but good for my elbows) and Ecuercin intensive repair hand creme(AWESOME STUFF) and Cetaphil (thin good for spreading on my legs) everyday lotion for the back of my legs everytime I use the bathroom. Plus my mixture with Menthol in it.(cooling uses moisturel as a base) I got all these lotions for 1/2 price plus I had more coupons so the big bottles of Eucerin cost me $3.00 a piece. The BIG Cetaphil 6 bucks.

From what I gather Aquaphor is just expensive Vaseline and I will look into just plain Vaseline with NO scent. It didn't seem to work but then again the first time we used Aquaphor it didn't work now it's helping my back. So it's worth a shot since the expense is so much less. I am going to the store once I can tolerate a shower so I'll give it a shot today. I have BAD crusting on my feet so I want to try Vaseline under my socks but I almost fell on my arse last night in the rain. I was slipping around in my shoes so bad from using Aquaphor lol.

Thanks again.

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See? You can laugh at yourself. That's improvement! Hey, sometimes you just gotta laugh or we'll go nuts!

Keep pushing on through this hon.

Your family ---- sad that they don't "get it". Perhaps one day they will. Friends ---- you will lose some who just can't or won't "see" it. But if that's all it takes to make them run then they really weren't the kind of friends that count now are they?

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I learned this three years ago....again my own mother purposely sabotages me. My husband called her down and that was the last time I saw her. She wanted me to eat cake, it was my birthday....after all. Hubs went bat shit and she was like I'm her Mom and he was like and I've been at her bedside for the last decade where have you been? Friends or supposed friends have lied to me and I've gotten glutened from food they swore was safe. Yah I know about the mind games ppl play with you. People are terrified food can do this it kinda makes them insane and they do terrible things. No worries. I've lived through this I can heal this too.

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You have a wonderfully supportive husband! Yay for him & yay for you!!!!!!

That fact alone makes your journey so much easier. Some people don't get that kind of support from their spouse.

Don't forget to give him some extra special attention sometimes.

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You have a wonderfully supportive husband! Yay for him & yay for you!!!!!!

That fact alone makes your journey so much easier. Some people don't get that kind of support from their spouse.

Don't forget to give him some extra special attention sometimes.

I am plying him with video games and lots of alone boyz time. I know what that is like. When he has had enough and needs to decompress I am alone emotionally, no boxer in my corner and I see what a person with no support system has to fight with and I feel blessed when he helps again. Sadly, my illnesses gave him a stress ulcer. He HAS to take time away or he will worry himself sick. I make him do it. But I feel the loss....but he needs his time or he will go crazy. Marriage is about compromise we may not communicate perfectly but we do compromise.....It also helps we have been together 13 yrs, we know each other, we picked the right mate.

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And you have the most important rule down pat ---- compromise.

39 years here.

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    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • 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  
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