Dapsone & Dh & Dh Experience

[Franceen]

I'm 54 years old. About 5 years ago I was getting gas and bloat and either constipated or going to0 much. I read a book about IBS and it said FIBER FIBER FIBER, WHOLE GRAIN WHOLE GRAN WHOLE GRAIN. So I probably increased my whole wheat intake by about 10 times! The gas/bloat went away! Then, About 4 years ago started getting a rash, which gradually increased to a major major outbreak on legs, arms, upper and lower back, butt, and even midriff. Little red bumps that I quickly scratched open, then they scabbed and I scratched scab off, then evetually healed, with ugly round brown scar. Went to dermatologist (only one on my health plan) who was AWFUL. He seemed to only treat teenage acne. He said "oh you have an itch!" Take Prednisone. Took that, gained weight, stopped, got rash back. Dermatologist said "scabies, bedbugs, or atopic dermatitis, Take more PREDNISONE!" Went to allergist. Got many skin tests. Cats, dust mites, fragrance, chicken, chocolate, carbomer, rubber- "not VERY allergic but try eliminating those".

Didn't work. Rash worse. Scars everywhere. More itch. VERY VERY BAD ITCH. Even in my crotch by then.

Gynecologist, said "menopause harmones" use this steroid cream! Eat more fiber. Speed up your metabolism. Wear less clothing in summer heat. More WHOLE WHEAT. MORE RASH.

Took home bloodtest for wheat, dairy, egg, soy, peanut allergy. NEGATIVE RESULTS.

Went to Medical College of Virginia Dermatologist. But NEW Rash had mysteriously disappeared while I was in Germany for 3 weeks! (Discovered they don't have much Gluten in their foods). So hotshot Dermatologiest told me to eat like I ate in Germany and use Cocoa Butter to get rid of scars. He also said "menopause" ....very common reaction to Menopause - atopic dermatitis.

FRUSTRATED TO THE HILT. Rash came back 2 weeks after that visit. So,.......

I come from a family of Doctors. (All retired now though).

Went to Medical Library. Did Research. Decided I had DH. Once I decided that all the pieces fit together! (gas/bloat, IBS-like symptoms, hip and joint pain and rash).

Brought boatload of paper (articles) to my Allergist (the ONE Dr. that was willing to LISTEN).

She said "TAKE DAPSONE" and if that works you have DH. How smart you are to self-diagnose! YOU ALSO NEED TO BE GLUTEN FREE and LESS IODINE (salt).

Took 75 Mg/day Dapsone, big improvement but not a total.

Upped dose to 100 Mg/day (all at once, not split dose). TRIED very hard to go Gluten Free (VERY HARD).

RASH ALL GONE IN 3 WEEKS. Became MOSTLY gluten-free by that time. RASH GONE STILL.

THen Dr. said "Need Biopsy". Made appt for that. Dr. who does biopsies said, your rash is all gone, can't do Biopsy. But, I've seen DH before, and you have it. Come back if you have another fresh breakout.

3 months later: happily taking Dasone 100 Mg/day, gluten-free as best I could be. (only transgression was MALT FLAVORING in Frosted Flakes and CAPT Crunch).

Went to BIG CONFERENCE at BIG FANCY HOTEL on Waikiki in Hawaii for 7 days.

Meals included. And conference continued during LUNCH AND DINNER.

Hotel would no let me bring in my own food, and would not give me special meal.

STARVED for 3 days - ate only pineapple, bananas, grapes, melon, chocolate and ice cream and plain salad.

GAVE IN AND ATE A LOT OF GLUTEN FOOD for last 4 days. Airplane food on way home. LOTS OF GLUTEN!!

Started to itch badly last 2 days in Hawaii (ankles, lower leg).

Fullblown RASH by 2 weeks after trip ( in spite of being gluten-free after trip).

Was still taking 100 MG Dapsone/d but NO LONGER WORKING.

Upped dose to 200 MG/Day last week.

Went for Biopsy and bloodwork 2 days ago.

Wondering what the results will be - since I didn't stop the Dapsone and didn't challenge the diet by eating Gluten for several weeks prior to testing. Rash bad enough without that! He actually did 2 biopsies, one from a new lesion and one nearby for standard pathology. And he did 3 different bloodtests for IGA, and other stuff.

In a way, I really HOPE it's positive for DH, because the treatment is non-medical, (it's only FOOD, right?).

And it's controllable BY ME.

If it's not that, then what? MORE PREDNISONE???? (NO WAY).

As for the Dapsone experience. It hasn't affected my THAT much. My red blood count was a little down, but nothing that the Dr. worried about. I also am taking 400 Mg of Cimetidine with it. That is supposed to alleviate the methylglobemia (Sp?) and improve Dapsone uptake in system.

Seems to work. I've lost a lot of appetite, but that's ok, because I could stand to lose 20 Lbs.

And there isn't much gluten-free that I like (except fruit). I just started 200 Mg/d so don't know how that will affect me.

Waiting for the biopsy results and bloodwork results.

To those more experienced, does the above experience sound typical of DH?

Franceen

[jerseyangel]

Franceen--I don't have DH, so I can't be of any help there. I just wanted to say I read your story, and it never fails to amaze me how clueless doctors can be! I got a similar runaround for years--it took 20 years for me to get my Celiac diagnosis. Welcome in--I'm sure others with DH experiences will weigh in soon

[CarolynB]

Franceen--I don't have DH, so I can't be of any help there. I just wanted to say I read your story, and it never fails to amaze me how clueless doctors can be! I got a similar runaround for years--it took 20 years for me to get my Celiac diagnosis. Welcome in--I'm sure others with DH experiences will weigh in soon

My husband has celiac and dh. He has never been on dapsone but he has been gluten free for a year and his rash isn't improving. Lately it has really been bad. He has tried vegetable oil, olive oil, and coconut oil. Nothing seems to help. Doctors are clueless it took 10 years and lots of money befor my husband was finally diagnosed last year. His celiac kicked in after he quit smoking. Of course all the doctors said no that wouldn't cause him to get sick but it did.

CarolynB

[jljeje]

Hi, just read your post and find it very interesting - in fact, if I had read yours first, I probably wouldn't have just entered a new post (anyone been dx dh by sight...).

Lots of your experience sounds familiar to me. I'm wondering how long did it take for you to blister again? My dermatologist diagnosed me without any testing & now 4 months later, I want the skin biopsy. He said sure, but that I had to come up with at least one blister first.

So, I started back on a 'normal diet' about 2 weeks ago. Like you, after being pretty much gluten free, and taking some Dapsone, my skin has improved - no active blisters, but lots of redness and tiny bumps. (Of course, the awful scarring is still there.)

I'm wondering how long it will take to get a blister - evidently, it took years to get them in the first place - we are the same age! besides I'm beginning to just feel bad in general.

Thanks for sharing your experience - it's such a good way to find out how other people discover this disease and how they deal with it.

jljeje

[Franceen]

My story continues beyond what I wrote in my original post.

Started Dapsone 100 Mg/day for the rash in mid-December. I had started gradually to eliminate Gluten in October and was mostly gluten-free by Dec but rash still bad. Took 3 weeks of Dapsone to get a complete lack of new blisters and end to "everywhere all the time" ITCH. (Yes scabs and scars still there).

I was GREAT through Jan & Feb. But Dapsone was having an ill-effect on me that I didn't know about. But no new rash and no itch.

Went to Hawaii for March 5 - 11. Stopped being gluten-free by necessity in Hawaii. By the end of trip was eating waffles or frosted flakes for breakfast, and dinner food that wasn't OBVIOUSLY Gluten'd like bread or noodles, but still got enough gluten. By March 10th rash was re-appearing on ankles with the awful itch.

Called Dr. first on day home. She said to increase Dapsone to 200 Mg/day. Rash getting worse (DH-like rash). By 5th day of 200 Mg I had a DIFFERENT rash, EVERYWHERE, dark red swollen wheals and non-blistering bumps in places I hadn't had rash before. Skin became leathery and wrinkled and ITCHED horribly and started to exfoliate a little bit in places like my forearms and shins.

Went to Dr. for long-awaited biopsy. He did two - one lesion and one near a lesion. I think he did them backwards (lesion for IgA, IgT - celiac and non-lesion for standard pathology - but don't know). Results were negative for celiac, but regular pathology showed major eonsophils (spelling) a component of ALLERGY (Dapsone allergy?).

All allergy skin tests have repeatedly been negative throughout the years except for mild minor reaction to cats, dust mites, and really minor for chocolate. Removal of those things has had no effect on skin and Dr. thinks that's not the problem.

At biopsy session, Dr. said the "other" rash looked like a reaction to Dapsone (and that can be fatal), so I should cut back to 100 Mg/day again. I did that immediately. They ordered the RBC, Liver bloodwork that day.

My Liver enzymes were out the window as was my blood eonsophils. The Dapsone was killing me and I had fullblown Dapsone Hypersensitivity Syndrome. It was 1.5 weeks ago that I got the results to the biopsies (celiac negative - but other Dr. thinks that's a false negative because I'd been so truly gluten-free and the Hawaii trip may not have been as much gluten as I thought.......not much logic here).

So now I'm being sent to a gastroenterologist next week because of the liver problems. (I had Hepatitis A and C when I was 19 and 20 and I finally completely cleared Hep C from blood about 4 years ago, with completely normal ALT readings several months in a row). And I guess they also are supposedely Celiac-smart.

About 2 weeks ago the rash just continued to get worse and worse and worse in spite of only 100 Mg Dapsone (once you get hypersensitive to a drug it may not be tolerated in any dose forever). I started skipping showers every other day, it hurt so badly and the water pressure and heat just made the wheals horrific and itch something terrible. Yet, when I woke up after taking 4 benedryl at bedtime, the LOOK of the rash was much better, only to get worse all day and then repeat the next night. And Dapsone was not working anyway. I'm staying gluten-free, but really frustrated.

Removing Dasponse stopped the hepatitis symptoms (weak/tired, dark urine, jaundice, Dapsone rash STARTED to subside a very small amount, but the DH rash raged.

3 Days ago they put me on Prednisone short course. And the rash is just now going away completely and itch is much less. Still got scabs and discoloration, but greatly improved and not a lot of new blister (a very few in places that it's easy to scratch like wrists and elbows).

Next week we'll see what Gastro thinks.

It will getting hot here in Virginia very soon and I have such ugly skin/scabs/redness/wheals that I have to wear long sleeves, long pants, hose, or socks, to protect the sight of my co-workers and not having them say " eeewwwuuu LEPER", and wearing all that clothing can lead to HEAT RASH! Thank goodness everything is air conditioned.

Iv'e thought about Lupus, but sun doesn't affect my rash and it's not on the face, and never has been. Some bloodtest was also negative for IgE (But they still put me on Singulair with no results).

I'm afraid to death that the rash will rage again when I stop the Prednisone next week. And that we won't know what it is and be back a square one.

I have the Enterolab test, but haven't been able to coordinate a poop event, with the days DHL picks up and time of day and "freezing it" (family highly objects to that). Working on it.

I have York Nutrition lab's blood test for Celiac (IgA, IgG, and the third too). To double check the Dr's lab.

And I have the blood test for the 10 common allergens to double check the Dr's lab too (Soy egg seafood wheat tree nuts, dairy, etc). When I get the guts to prick my finger a bunch of times and get the poop schedule right and go to the gastro, maybe I'll have some results.

I HOPE UPON HOPE that it IS DH/Celiac. Why? Bause the "cure" (not a cure, really the "fix") is non-medically invasive, granted it's a pain, but it is totally under your own control, and isn't really injurious (like meds like Prednisone). It's HEALTHFUL if you do it right and I've lost some weight without cake, pie, cookies, waffles, bagels, etc. And I don't miss them that much anymore anyway, so haven't looked into the yukky tasting gluten-free varieties. Happy enough without them. (I want a Dunkin Doughnut though!)

AND above all, I just want NORMAL SKIN!!!!!!!!!!!

I've had this rash for over 3 years with the only breaks being from Prednisone for about 2 weeks a couple of times from a Dermatologist (not gluten-free then), and the Dapsone for 2 months. I'm from a family of Dr's and I've read here on the forum and many other places that 500 Mg of Tetracycline and 500 Mg of Niacin (OTC) taken together two or 3 times a day is a second treatment to Dapsone. Since most Dr.'s have Tetra. lying around the house and Niacin is OTC, I'm trying that in a reduced dose (until the liver gets better). With the Prednisone I won't be able to tell if it's working but maybe afterwards.

By the way, Ibuprophen kills the itch for me, but need to take 4 tabs every 4 hours to maintain. That's a lot for my liver, but works in a pinch. And I take 4 in AM and 4 at bedtime with the 4 benedryl

Good Luck, and I'm anxious to hear other's experiences with the AWFUL DH SKIN.

Franceen

[CarolynB]

My story continues beyond what I wrote in my original post.

Started Dapsone 100 Mg/day for the rash in mid-December. I had started gradually to eliminate Gluten in October and was mostly gluten-free by Dec but rash still bad. Took 3 weeks of Dapsone to get a complete lack of new blisters and end to "everywhere all the time" ITCH. (Yes scabs and scars still there).

I was GREAT through Jan & Feb. But Dapsone was having an ill-effect on me that I didn't know about. But no new rash and no itch.

Went to Hawaii for March 5 - 11. Stopped being gluten-free by necessity in Hawaii. By the end of trip was eating waffles or frosted flakes for breakfast, and dinner food that wasn't OBVIOUSLY Gluten'd like bread or noodles, but still got enough gluten. By March 10th rash was re-appearing on ankles with the awful itch.

Called Dr. first on day home. She said to increase Dapsone to 200 Mg/day. Rash getting worse (DH-like rash). By 5th day of 200 Mg I had a DIFFERENT rash, EVERYWHERE, dark red swollen wheals and non-blistering bumps in places I hadn't had rash before. Skin became leathery and wrinkled and ITCHED horribly and started to exfoliate a little bit in places like my forearms and shins.

Went to Dr. for long-awaited biopsy. He did two - one lesion and one near a lesion. I think he did them backwards (lesion for IgA, IgT - celiac and non-lesion for standard pathology - but don't know). Results were negative for celiac, but regular pathology showed major eonsophils (spelling) a component of ALLERGY (Dapsone allergy?).

All allergy skin tests have repeatedly been negative throughout the years except for mild minor reaction to cats, dust mites, and really minor for chocolate. Removal of those things has had no effect on skin and Dr. thinks that's not the problem.

At biopsy session, Dr. said the "other" rash looked like a reaction to Dapsone (and that can be fatal), so I should cut back to 100 Mg/day again. I did that immediately. They ordered the RBC, Liver bloodwork that day.

My Liver enzymes were out the window as was my blood eonsophils. The Dapsone was killing me and I had fullblown Dapsone Hypersensitivity Syndrome. It was 1.5 weeks ago that I got the results to the biopsies (celiac negative - but other Dr. thinks that's a false negative because I'd been so truly gluten-free and the Hawaii trip may not have been as much gluten as I thought.......not much logic here).

So now I'm being sent to a gastroenterologist next week because of the liver problems. (I had Hepatitis A and C when I was 19 and 20 and I finally completely cleared Hep C from blood about 4 years ago, with completely normal ALT readings several months in a row). And I guess they also are supposedely Celiac-smart.

About 2 weeks ago the rash just continued to get worse and worse and worse in spite of only 100 Mg Dapsone (once you get hypersensitive to a drug it may not be tolerated in any dose forever). I started skipping showers every other day, it hurt so badly and the water pressure and heat just made the wheals horrific and itch something terrible. Yet, when I woke up after taking 4 benedryl at bedtime, the LOOK of the rash was much better, only to get worse all day and then repeat the next night. And Dapsone was not working anyway. I'm staying gluten-free, but really frustrated.

Removing Dasponse stopped the hepatitis symptoms (weak/tired, dark urine, jaundice, Dapsone rash STARTED to subside a very small amount, but the DH rash raged.

3 Days ago they put me on Prednisone short course. And the rash is just now going away completely and itch is much less. Still got scabs and discoloration, but greatly improved and not a lot of new blister (a very few in places that it's easy to scratch like wrists and elbows).

Next week we'll see what Gastro thinks.

It will getting hot here in Virginia very soon and I have such ugly skin/scabs/redness/wheals that I have to wear long sleeves, long pants, hose, or socks, to protect the sight of my co-workers and not having them say " eeewwwuuu LEPER", and wearing all that clothing can lead to HEAT RASH! Thank goodness everything is air conditioned.

Iv'e thought about Lupus, but sun doesn't affect my rash and it's not on the face, and never has been. Some bloodtest was also negative for IgE (But they still put me on Singulair with no results).

I'm afraid to death that the rash will rage again when I stop the Prednisone next week. And that we won't know what it is and be back a square one.

I have the Enterolab test, but haven't been able to coordinate a poop event, with the days DHL picks up and time of day and "freezing it" (family highly objects to that). Working on it.

I have York Nutrition lab's blood test for Celiac (IgA, IgG, and the third too). To double check the Dr's lab.

And I have the blood test for the 10 common allergens to double check the Dr's lab too (Soy egg seafood wheat tree nuts, dairy, etc). When I get the guts to prick my finger a bunch of times and get the poop schedule right and go to the gastro, maybe I'll have some results.

I HOPE UPON HOPE that it IS DH/Celiac. Why? Bause the "cure" (not a cure, really the "fix") is non-medically invasive, granted it's a pain, but it is totally under your own control, and isn't really injurious (like meds like Prednisone). It's HEALTHFUL if you do it right and I've lost some weight without cake, pie, cookies, waffles, bagels, etc. And I don't miss them that much anymore anyway, so haven't looked into the yukky tasting gluten-free varieties. Happy enough without them. (I want a Dunkin Doughnut though!)

AND above all, I just want NORMAL SKIN!!!!!!!!!!!

I've had this rash for over 3 years with the only breaks being from Prednisone for about 2 weeks a couple of times from a Dermatologist (not gluten-free then), and the Dapsone for 2 months. I'm from a family of Dr's and I've read here on the forum and many other places that 500 Mg of Tetracycline and 500 Mg of Niacin (OTC) taken together two or 3 times a day is a second treatment to Dapsone. Since most Dr.'s have Tetra. lying around the house and Niacin is OTC, I'm trying that in a reduced dose (until the liver gets better). With the Prednisone I won't be able to tell if it's working but maybe afterwards.

By the way, Ibuprophen kills the itch for me, but need to take 4 tabs every 4 hours to maintain. That's a lot for my liver, but works in a pinch. And I take 4 in AM and 4 at bedtime with the 4 benedryl

Good Luck, and I'm anxious to hear other's experiences with the AWFUL DH SKIN.

Franceen

[CarolynB]

Franceene,

My husband was sick for 10 years. Had every test but an endoscopy. He even had his gall bladder removed. His liver enzymes were messed up. He had an itch, mostly on his legs.

Finally one day I went with him to the doctor and I mentioned I didn't think he got any good out of his food that prompted the doctor to make an appointment with a GI speciallist and he had an endoscopy. They did a biopsy in different places in his small intestines. With an endoscopy a GI should know right away, because your villa are folded up or gone.

He went on a gluten-free diet and in 3 days he started feeling better, but he still had this rash. One week ago I read on this sight you should cut out iodized salt. I did that right away and his rash is getting better. He won't take anything for it.

You can eat bread, cake and any other dessert, just don't use wheat flour. Buy a Betty Hagman BAkes Bread.There's a feather lite bread in there that smells like bread baking. Fresh it tastes like any other home made bread. Get your rice, potatoe starch, tapioca starch at an asian market, it's much finer in texture. Also only use Red STar Bread Machine yeast, (through away the dirrections), and use it like any other yeast. I mix this up and put it in a pan lined with a grocery sack and sprayed with pam. Then I freeze it. When I need a loaf I take it out, spray a pan and put it in the frig over night or put it in befor I go to work. When I come home I take it out, put it in a preheated 200 degree, then turn it off cover the bread and let rise. When it gets to the top of the pan, heat oven and bake. My husband just ate four slices toasted with jelly that has been in the frig for 12 days.

Do not use a bread machine, buy a stand mixer, (Wall Mart $30), Just mix and put in pan.

My husband just turned 64 and feels better than he has in 20 years.

My husband weighed 124lbs. when diagnosed one year ago and today he weighs 170. I'm threatening to put him on a diet.

Don't get me wrong baking gluten-free is hard, but you can eat good. Everyone at my house eats gluten-free and they don't even know. It takes planning.

Good luck,

CarolynB.

[Pegster]

By the way, Ibuprophen kills the itch for me, but need to take 4 tabs every 4 hours to maintain. That's a lot for my liver, but works in a pinch. And I take 4 in AM and 4 at bedtime with the 4 benedryl

Good Luck, and I'm anxious to hear other's experiences with the AWFUL DH SKIN.

Franceen

[Franceen]

By the way, Ibuprophen kills the itch for me, but need to take 4 tabs every 4 hours to maintain. That's a lot for my liver, but works in a pinch. And I take 4 in AM and 4 at bedtime with the 4 benedryl

Good Luck, and I'm anxious to hear other's experiences with the AWFUL DH SKIN.

Franceen

It's funny that you say Ibuprofen kills the itch for you, because it causes my dh to flare up. Whenever I take anti-inflamatories my dh gets worse. I'm sorry the rash doesn't seem to ever go away. It must be miserable for you. I hope you get some results to your tests soon.

Yes, unfortunately I'm aware that NSAIDS can cause DH to get worse! Here's the "rub" (pun maybe?)!

The Ibuprophen makes it stop itching which makes me stop scratching. It also causes more rash. But scratching off old scabs and scratching all day and night is probably just as bad for my skin (infection, scarring, lichenization etc) as the flares from the Ibuprophen. A "Catch 22" for sure. But the Ibuprophen helped one more thing: It is not very nice to sit in meetings and stand at a podium doing speeches while scratching ones legs, arms, underarms, crotch, ankles, back, abdomen. My scratching became unconscious, unable to be stopped and I was once asked to not attend something because I looked like a monkey! So, to keep my professionalism and job and my skin from looing like a leper, I take Ibuprophen.

BTW, the Prednisone I'm on now isn't working nearly as well as it has in the past. That's scary too.

Thanks everyone for all your hints, help, sympathy notes, info and caring.

It helps a lot.

Franceen