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Healing And Soothing Dh

lookingforacure

By lookingforacure
in Dermatitis Herpetiformis

Recommended Posts

lookingforacure Newbie
lookingforacure
Posted

I have been Gluten Free for almost 6 years. My diagnosis began in June 2004 when I developed a horrible itchy rash that started to feel like a bad burn and ooze. I spent many years trying to find a solutions. I have seen 10-15 different doctors and no one can offer any relief to my flair ups. My DH has been pretty well maintained by diet but about every 6 months I have an awful flair up! I am going thru this right now and am hoping for some ideas. I use Alba Botanica lotion and Baby wash. I have tried a light lavander mist on my skin and that seems to help. But I know there has to be more out there! I was on Daposone for 2 years and finally got off of it as I saw no change. This condition is debilitating. When I flair up I am unable to do minor things such as focus and I feel like I can hardly move. I am unable to do the things I love like working out and swimming when this happens. After 6 years of this battle I need answers from people who understand this condition. Please let me know if you have anything that soothes, calms, and heals the itch and the burn. No one understands what we go thru and the pain associated with this.

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Bren in Florida Newbie
Bren in Florida
Posted

I was prescribed a steroid cream in my travels to the DERM. Of course, none of the docs I went to was able to diagnose me, correctly that is. I am a critical care nurse and I had to figure this horrible rash out for myself. Took me only 3 years while I continued eating gluten. Finally had a bout that sent me to the hospital. For 2 wks. I was seen by 5 docs. No diagnosis. Oh, sorry, just the typical "you have dry skin" and "you don't have an infection" and "cellulitis" and "eczema" oh and let's not forget "bug bites". Anyway, I have been in the process for the past year of learning and label reading. Making mistakes along the way... like all of us. It's hard but I am getting there. I still get my itchy spots but have longer periods of relief. I think the current spots were from eating a bunch of chips and due to the salt, I got the flare. I don't think there was gluten in them but of course I could be wrong. I use the steroid cream on the spots and do my best to not eat gluten. I don't know what else to do. It is difficult to deal with. I agree that those that don't suffer from this itch just don't get it. How could they? It is nice to read this forum because I feel like less of a freak. I don't know anyone in the world that has this except via my computer screen so it's comforting. We have to be here for each other. I figured out what was going on with me by keeping a strict food journal and charting my symptoms on a calendar. It took about a month after starting that to see a pattern. The last DERM I went to looked at me like I was a ditz when I asked if it could be something I was eating? Never even suggested I go for allergy testing. He had to keep up the pace of the office with an appt every 10 minutes. Then took my hundred fifty bucks. This was after leaving my 2 week hospital stay and receiving antibiotics for possible skin infection that it turns out was unnecessary. I got a huge hospital bill for that one. It has been incredibly frustrating. Not to mention that if your an illegal alien you get free hospital care because you don't have any money.

Crimson Rookie
Crimson
Posted

First I have to say that I am not diagnosed by a doctor. They did skin biopsy and found nothing. But they did it wrong. I have no insurance and cannot afford to continuously go to doctors that can't do anything for me.... *you can view pics of some lesions I've had and my home iodine patch test in a previous post of mine*

That being said. I find that my skin breaks out more rapidly if I'm exposed to gluten through baking. It could be a coincidence.. but it usually happens if I walk into someone's house and they've been baking gluten foods.

I get a horrible rash on my sides, it starts right above the hip bone and can reach my chest at it's worst. It feels like a chemical burn, itches like mad and I can't wear anything that isn't very loose fitting.

Nothing seems to help it. My current rash has been there, getting better and worse again for a number of months.

What I find kind of helps... epsome salt baths. I have a filtered shower head and use the shower to fill the tub and soak for at least fifteen minutes. But, I have to do this often to get relief. It does help to keep the rash in smaller areas rather than spreading over my entire abdominal area.

I use a good bit of epsome salt and baking soda in hot *not too hot* water.

I've tried lotions, prescriptions, antibiotics and so on... not much of anything helps. Even the salts do not make the rash go away. But you may find relief.

Feel better!

dh mom Newbie
dh mom
Posted

I have been Gluten Free for almost 6 years. My diagnosis began in June 2004 when I developed a horrible itchy rash that started to feel like a bad burn and ooze. I spent many years trying to find a solutions. I have seen 10-15 different doctors and no one can offer any relief to my flair ups. My DH has been pretty well maintained by diet but about every 6 months I have an awful flair up! I am going thru this right now and am hoping for some ideas. I use Alba Botanica lotion and Baby wash. I have tried a light lavander mist on my skin and that seems to help. But I know there has to be more out there! I was on Daposone for 2 years and finally got off of it as I saw no change. This condition is debilitating. When I flair up I am unable to do minor things such as focus and I feel like I can hardly move. I am unable to do the things I love like working out and swimming when this happens. After 6 years of this battle I need answers from people who understand this condition. Please let me know if you have anything that soothes, calms, and heals the itch and the burn. No one understands what we go thru and the pain associated with this.

hi, I hope I am typing this in the correct place..... Our son has DH (diagnosed at 18) and after a year from hell from being on every kind of medicine under the son, and ultimetly a semester off from school, he is on a drug called sulfapyridine. He was on dapsone, and had MAJOR problems. Sulfapyridine is widely used in the UK and not used here anymore. Good luck!

it is not available in the drugstore. Your doctor needs to contact Jacobus Pharmaceutical and request that they make it up for you. He used this medicine initially to get rid of the rash. Now he uses it only when he has accidentally gotton into the gluten. No side effects at all. It gets rid of the itch within an hour and the blisters probably within a day. There is a dapson cream which is made for acne. It doesn't touch DH. I researched the heck out of this problem and the sulfapyradine has been a terrific anwser for us. He tried steriods, colchicine, and many others. Let me know if you have more questions. BTW - The doc scripting this for him is an internist, who has celiac himself (but not DH). He found out about the drug from a dermatologist at UVA medical center.

martha37 Newbie
martha37
Posted

hi, I hope I am typing this in the correct place..... Our son has DH (diagnosed at 18) and after a year from hell from being on every kind of medicine under the son, and ultimetly a semester off from school, he is on a drug called sulfapyridine. He was on dapsone, and had MAJOR problems. Sulfapyridine is widely used in the UK and not used here anymore. Good luck!

it is not available in the drugstore. Your doctor needs to contact Jacobus Pharmaceutical and request that they make it up for you. He used this medicine initially to get rid of the rash. Now he uses it only when he has accidentally gotton into the gluten. No side effects at all. It gets rid of the itch within an hour and the blisters probably within a day. There is a dapson cream which is made for acne. It doesn't touch DH. I researched the heck out of this problem and the sulfapyradine has been a terrific anwser for us. He tried steriods, colchicine, and many others. Let me know if you have more questions. BTW - The doc scripting this for him is an internist, who has celiac himself (but not DH). He found out about the drug from a dermatologist at UVA medical center.

martha37 Newbie
martha37
Posted

Hi. I am extremely interested in the medicine you mentioned, but when I called my doctor about getting it, she asked for a phone number for the pharmaceutical company (looked it up on web , but saw no phone number) and also needs to know if it is salve, etc. Is there any site or info you can give me regarding this medicine, as I would so love to have some relief.

thanks

martha

dh mom Newbie
dh mom
Posted

Hi. I am extremely interested in the medicine you mentioned, but when I called my doctor about getting it, she asked for a phone number for the pharmaceutical company (looked it up on web , but saw no phone number) and also needs to know if it is salve, etc. Is there any site or info you can give me regarding this medicine, as I would so love to have some relief.

thanks

martha

Hi Martha,

my email is bbuntrock@comcast.net

I recd your email at 4:50 today and I called the docs office but they close at 4:30! I will call them tomorrow.

If you want you may contact my email as this website is somewhat tedious to get into.

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dh mom Newbie
dh mom
Posted

Hi Martha,

I called Jobus Pharmaceutical. (609)921-7447 The sulfapyridine (500mg tablets) are actually produced as a trial

drug and are given away. no charge. They do this because the demand for the drug is so small, it costs more to bring it

to market than it does to give it away. You need to have your doc, (dermotologist) call and enroll you in the program. You will need to have blood drawn before they give it to you to enroll in program. The doc on the phone with whom I spoke said if your dermdoc isn't aware of this drug, they may not be keeping up with new info. THIS IS NOT HARD FOR THE DOCS TO GET, IT JUST TAKES A BIT MORE PAPERWORK THAN THE OTHER PATIENTS.....DON'T BE PUT OFF!

Within 45 minutes my son's itching will stop and the breakouts are pretty much gone in a day, or two depending on severity.

You do not have to be on this drug continually, you may take it as needed and it works! Good luck!

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