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I Am Miserable

casnco

By casnco
in Dermatitis Herpetiformis

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casnco Enthusiast
casnco
Posted

I am miserable to tears. I have the worst case of DH where there is no sunshine. I have been to the doctor a zillion times. She will give me anything I ask for but she doesn't have any suggestions of her own.

I am allergic to sulfa drugs and Dapson is a sulfa drug. So I read somewhere that tetracycline could be used also. So I asked for a course of that along with steroids to reduce the itching so I can heal. Well this method is not working. Has anyone tried anything else that works. I am about to loose my mind. Oh, I didn't mention, I have been gluten free for 4 years. Of course we all get cross contaminated but I am pretty anal about that stuff.

Any suggestions would be welcomed.

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gfgypsyqueen Enthusiast
gfgypsyqueen
Posted

Sorry to hear you are having such problems. Do you have a good source for health foods? The reason I am asking is sometimes they can recommend a good herbalist/kinisiologist (sp?). The kinisiologist uses muscle testing to see which herbs , creams, etc will work best for you and how much and how often you should use it. I am the first to admit that I was the BIGGEST skeptic when I first went. But I saw immediate changes in my health and now trust the herbalist more than my regular doctor for my overall health. They listen to your body and use their knowledge to find products that work best for you. Hopefully you find some relief soon.

RiceGuy Collaborator
RiceGuy
Posted

Though you probably are already doing this, I'd recommend avoiding sources of iodine and salt. Kelp is perhaps the most common item in which there is a huge amount of iodine, but many vegetables contain more than table salt, such as broccoli. It may also help to limit protein intake. Drink plenty of plain water. A magnesium supplement may also help.

Take the advice given by gfgypsyqueen, and seek out knowledgeable people outside the mainstream medical profession. I received more help from a health store owner than I ever got from any doctor.

I hope you find relief soon. I'm sure it is very uncomfortable.

casnco Enthusiast
casnco
Posted
  • Author

Thank you both for your suggestions. I called my local natural food store and they recommended me to an herbalist. I am going to contact them this afternoon. I am very greatful for your time and suggestions.

Riceguy, can you elaborate on why protien should be avoided? Do you mean animal protien or all protien?

  • 3 weeks later...
Joan (Maine) Newbie
Joan (Maine)
Posted

My DH improves when I am not only gluten-free, but iodine controlled al that passes my lips..... seafood and dairy (iodine and lactose) are aggravators for me. I am vigilant about every morsel that passes my lips, makeup, personal care products.....even laundry detergents, etc.

I have lichen sclerosis and hypothyroidism. when they say autoimmune diseases often occur in clusters, they aren't kidding...I have a raft of professionals....specialists are frustrating, expensive, and seemingly uninterested in the big picture.Alternative pracioners have been much more responsive even though they have not been covered by my insurance.

Joan

wowzer Community Regular
wowzer
Posted

Good luck, I hope that you get relief soon. I know itching is no fun. I was itching for so long a year ago. Really nothing truly stopped it. I got a little bit of relief from pure prednisone cream. I have to say gluten free has been the best cure. Keep us posted.

casnco Enthusiast
casnco
Posted
  • Author

Wowzer and Joan: Thanks so much for your input. Wowzer. I have more anti itch ream than I knew was available to man! I am taking claritin and it seems to help a little.

Joan; I just went to an herbalist on Wednesday. Of course that is not magic and an overnight cure doesn't happen. I have a lot of faith that she will be able to help me. I see a dermitologist tomorrow and a GI in June. WaHoo! Love specalists!

I also was glutened yesterday. Crap! My SIL tried so hard. She made green beans w/new potatoes and cole slaw. And strawberries with cool whip. she sweetened the berries with her regular sugar. I am sure it was contaminated. I always used the same spoon to dip out all of my dry ingredients. I wasn't thinking. But I sue paid last night and will probably cont. to pay with DH sypmtoms. I don't know how much more of this I can take. Oh, well. I am sure as much as God believes I can take.

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wowzer Community Regular
wowzer
Posted

I know at one point, it seemed like nothing stopped the itching, benadryl didn't even help much. No one could understand that itch. I hope you get relief soon.

SissySue Newbie
SissySue
Posted
I am miserable to tears. I have the worst case of DH where there is no sunshine. I have been to the doctor a zillion times. She will give me anything I ask for but she doesn't have any suggestions of her own.

I am allergic to sulfa drugs and Dapson is a sulfa drug. So I read somewhere that tetracycline could be used also. So I asked for a course of that along with steroids to reduce the itching so I can heal. Well this method is not working. Has anyone tried anything else that works. I am about to loose my mind. Oh, I didn't mention, I have been gluten free for 4 years. Of course we all get cross contaminated but I am pretty anal about that stuff.

Any suggestions would be welcomed.

Ask your doctor to prescribe Atarax. I used it first in 1963; it worked and I had a remission until 1965, then another dose of it, and I had a remission until 1967. I had been free of the rash of DH until two weeks ago; I tried my husbands' Atarax prescription -- it was old from his use for Poison Oak, and there were 10 pills; I tried two--no help, then four--no help; there are four 25 mg tablets left, and I hate to leave him without relief if he gets poison oak again, but I'm getting desperate. I hadn't heard about the gluten free diet until this most recent recurrence two weeks ago. i hate this stuff! My first experience with DH occurred when I was 9 years old, and they had NO CLUE what it was; I went to one specialst after another all through grade school, high school, and then while I was in college my dermatologist got samples of Atarax and asked me to try it. It was like almost instantaneous relief. Try it and report back to us if you get any benefit.

  • 3 weeks later...
Lemontree Newbie
Lemontree
Posted
I am miserable to tears. I have the worst case of DH where there is no sunshine. I have been to the doctor a zillion times. She will give me anything I ask for but she doesn't have any suggestions of her own.

I am allergic to sulfa drugs and Dapson is a sulfa drug. So I read somewhere that tetracycline could be used also. So I asked for a course of that along with steroids to reduce the itching so I can heal. Well this method is not working. Has anyone tried anything else that works. I am about to loose my mind. Oh, I didn't mention, I have been gluten free for 4 years. Of course we all get cross contaminated but I am pretty anal about that stuff.

Any suggestions would be welcomed.

fire34 Newbie
fire34
Posted

I'm not sure if these items are sulfur based but maybe? I had the worse case of itching I had ever had and I went through three dermatologists before one finally took a biopsy of a blister. The first thing she gave me was BETAMETHASONE 05% OIN 45GM and then some dapsone. It really soothed the itching and cleared up the rash within about a week and a half. Ask your doctor about it. I also received some Cobetasol Propinate solution for some blisters/raches that were in my beard and scalp. Hope this gives you an additional avenue of relief and helps keep the rash away.

Good Luck! My prayers are with you.

I am miserable to tears. I have the worst case of DH where there is no sunshine. I have been to the doctor a zillion times. She will give me anything I ask for but she doesn't have any suggestions of her own.

I am allergic to sulfa drugs and Dapson is a sulfa drug. So I read somewhere that tetracycline could be used also. So I asked for a course of that along with steroids to reduce the itching so I can heal. Well this method is not working. Has anyone tried anything else that works. I am about to loose my mind. Oh, I didn't mention, I have been gluten free for 4 years. Of course we all get cross contaminated but I am pretty anal about that stuff.

Any suggestions would be welcomed.

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