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teebs in WV

Dapsone - Miscellaneous Questions

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As I mentioned in a previous post, I have been on Dapsone since October (25 mg twice a day). It has helped tremendously. However, when I get glutened, I get a breakout within 24 hours. Not as bad as before going on Dapsone, but still extremely itchy and ugly none the less. I have a question for the Dapsone veterans - have you ever increased your dosage on your own? My derm said that I could but I haven't done it yet....but am very close. If you have, how did you do it? If I have been taking 25mg twice a day, just up it to 3 times a day? I would really appreciate hearing some experiences.

Another Dapsone question - how frequently do most of you have your bloodwork monitored? My derm didn't set anything up on a routine basis, and I don't have an appt with him until April.

I am also curious how many people with DH or celiac disease have chronic itchy skin. I was up last night for 3 hours as the itching was driving me crazy. I really do not have any new blisters, but my feet and my hands were itching unbelievably.

Thanks,

Tracy

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I take Dapsone (25 mg) once a day.

When I get "glutened", I increase the dosage on my own.

I get blood tessts 3-4 times a year.

For the itchy skin, try some of Burt's Bees Wax lotion -- it helps me!I use the milk and honey lotion -- put it on after you shower.

Also, I quit using bar soap -- dries me out too much -- I usually use Dove's moisturizing body wash...

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When I took dapsone it was no more than 25 mg per day but I think my father was up to 100 at one point.

You can increase it on your own, HOWEVER, if your doctor has not done blood tests yet, he's not doing his job. It's my understanding that you should have blood tests very soon after you start and certainly by three months. After you've been tested a few times you can then go to testing once or twice a year.

Your goal, however, is to get off the dapsone completely. That can take a while, but if you've truly gone gluten-free you shouldn't be on dapsone for years.

richard

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Thank you both for your responses. I have an appointment with my general practitioner on Monday afternoon and will talk to him about doing some bloodwork.

Thanks again,

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Guest marshlakemom

Hi Tracey

Yes, I have the chronic itchy skin thing going on as well, especially if I ingest gluten. I use Oil of Olay (Quench) or Gold Bond when it gets really bad. Not too sure why this happens....thought it was just me. It is also very cold and dry here during the winter months.

Deb

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It's been a few years, but I'll try to be as accurate as I remember (I'll blame it on brain fog). My doctor started out with small dosages, then once my breakouts subsided but did not completely go away, he increased it. I got up to 150 mg/day (75 twice a day). I was not on a gluten-free diet at the time. In fact the dermatologist never mentioned it to me. My red blood cell count was at the lowest of lows, so he told me that he could not increase it any more if I started having breakouts. I went through a remission period of about 6 months, taking about 75 mg per week, sporadically if a bump showed up. Still not gluten free. Slowly, it came back, and I ended up at around 50 mg per day when I got pregnant and could not take it anymore. Goodbye, "free wheat pill", hello gluten free diet.

My blood work was done every two weeks in the very beginning. And each time he upped the dosage- before the appointment, then after taking the higher dosage for a little while. After being on it for a while, the blood work went to every couple months, then finally every six months, as long as the dosage didn't change. Up until my pregnancy, my new dermatologist liked to see me once a year, and have blood work done in six month intervals (unless he ups the dosage, which means an appt every 30 days for monitoring).

Lisa

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I hope you were able to get blood work done. It's VERY, VERY important. Most people have no probleme with dapsone, but some do and the only way to tell with some of them is blood tests.

richard

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Unfortunately, my appointment was with my general practitioner and since he didn't prescribe the dapsone, he wouldn't do my bloodwork. Needless to say, I am extremely frustrated. I left his office very upset. I am calling my dermatologist Monday morning insisting that he order the bloodwork. I have had very low red blood counts for years - before being diagnosed and beginning dapsone. I am obviously concerned.

Thank you all for your advice and experience.

Tracy

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Tracy -

I suffered with extremely itchy skin from head to toe and rashes before being diagnosed with celiac 9 months ago. Before I was diagnosed, I used plain aloe lotion to control the itching and found that it worked pretty well for about 12 hours at a time. Since going on the gluten-free diet, the itching subsided tremendously, however, I still have outbreaks. The dermatologist said those can continue for a year or two after going on the diet. I spoke with the dermatologist about dapsone, but I didn't like the anemia side-effects, so he suggested I use clobetasol ointment instead. It's a topical cortisone and it seems to work well for me. It probably would not be as effective for chronic, severe cases of dh, but you may want to discuss it with your doctor.

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Hello

I have been diagnosed with DH since March of 2006 and have been on Dapsone 100mg since then, recently I spent 10 days in the hospital 7 of the days in ICU, I thought it was just an asthma attack however 4 days after I was admitted I found out that it was something that is called metahemoglobinanemia, which means my blood was not allowing oxygen to bind to it. So now I can no longer take the dapsone for the fear of this occuring again and I really do not want another experience like that. My question is this my dermatology DR is wanting me to go on tetracycaline and NICOTINAMIDE, which is basically niacin, B3. My insurance company covers it but the copay is $75, too expensive. Do any of you know something that is the same thing over the counter or any other treatments other than the tetracycalin, dapsone or Sulfapyridine. Thanks!!

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No help on the medication, BUT, if you're not strictly gluten-free, that's absolutely what you need to do. Period. That should solve all.

richard

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Thanks for all of these posts, it's been really helpful to read. I've been struggling with DH since 2008 and I've been strictly gluten-free for a year or more. But no matter how hard I try, I still seems to get some contamination every month of so and my body breaks out in a new round of really painful and itching rashes (all centrally located where the sun does not usually shine). It's incredibly frustrating to live so rigidly and yet still get these breakouts, which can sometimes take months to finally go back into remission. My dermatologist recommended that I try taking Dapsone in order to avoid the pain of those inevitable moments of cross-contamination. He said that I would need to get bloodwork done every week for the first month in order to make sure I'm not have a bad reaction. My greatest weapon thus far has been the topical steroid cream Cloderm. My dermatologist prescribed it and within three days (applying a thin coat twice daily) all of the itching ceases. It's literally kept me from going insane. Though I get nervous using it because steroid creams can lead to an eventual and permanent thinning of the skin but my Dermatologist says using it only a few days a month won't cause any damage. I'm currently debating the Dapsone. I know that I will still need to live a strictly gluten-free diet, but if I could end these occasional outbreaks it would be worth the risks.

Jogo

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Thanks for all of these posts, it's been really helpful to read. I've been struggling with DH since 2008 and I've been strictly gluten-free for a year or more. But no matter how hard I try, I still seems to get some contamination every month of so and my body breaks out in a new round of really painful and itching rashes (all centrally located where the sun does not usually shine). It's incredibly frustrating to live so rigidly and yet still get these breakouts, which can sometimes take months to finally go back into remission. My dermatologist recommended that I try taking Dapsone in order to avoid the pain of those inevitable moments of cross-contamination. He said that I would need to get bloodwork done every week for the first month in order to make sure I'm not have a bad reaction. My greatest weapon thus far has been the topical steroid cream Cloderm. My dermatologist prescribed it and within three days (applying a thin coat twice daily) all of the itching ceases. It's literally kept me from going insane. Though I get nervous using it because steroid creams can lead to an eventual and permanent thinning of the skin but my Dermatologist says using it only a few days a month won't cause any damage. I'm currently debating the Dapsone. I know that I will still need to live a strictly gluten-free diet, but if I could end these occasional outbreaks it would be worth the risks.

Jogo

There are much more recent threads about this. These poster may not still be around. You might want to look around for more up- to - date info on a recent thread.

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Thanks for all of these posts, it's been really helpful to read. I've been struggling with DH since 2008 and I've been strictly gluten-free for a year or more. But no matter how hard I try, I still seems to get some contamination every month of so and my body breaks out in a new round of really painful and itching rashes (all centrally located where the sun does not usually shine). It's incredibly frustrating to live so rigidly and yet still get these breakouts, which can sometimes take months to finally go back into remission. My dermatologist recommended that I try taking Dapsone in order to avoid the pain of those inevitable moments of cross-contamination. He said that I would need to get bloodwork done every week for the first month in order to make sure I'm not have a bad reaction. My greatest weapon thus far has been the topical steroid cream Cloderm. My dermatologist prescribed it and within three days (applying a thin coat twice daily) all of the itching ceases. It's literally kept me from going insane. Though I get nervous using it because steroid creams can lead to an eventual and permanent thinning of the skin but my Dermatologist says using it only a few days a month won't cause any damage. I'm currently debating the Dapsone. I know that I will still need to live a strictly gluten-free diet, but if I could end these occasional outbreaks it would be worth the risks.

Jogo

Have you tried lowering your iodine intake? Some DH sufferers are sensitive to it, and it makes DH flare.

Google "thyca" for details on a low iodine diet.

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Thanks for all of these posts, it's been really helpful to read. I've been struggling with DH since 2008 and I've been strictly gluten-free for a year or more. But no matter how hard I try, I still seems to get some contamination every month of so and my body breaks out in a new round of really painful and itching rashes (all centrally located where the sun does not usually shine). It's incredibly frustrating to live so rigidly and yet still get these breakouts, which can sometimes take months to finally go back into remission. My dermatologist recommended that I try taking Dapsone in order to avoid the pain of those inevitable moments of cross-contamination. He said that I would need to get bloodwork done every week for the first month in order to make sure I'm not have a bad reaction. My greatest weapon thus far has been the topical steroid cream Cloderm. My dermatologist prescribed it and within three days (applying a thin coat twice daily) all of the itching ceases. It's literally kept me from going insane. Though I get nervous using it because steroid creams can lead to an eventual and permanent thinning of the skin but my Dermatologist says using it only a few days a month won't cause any damage. I'm currently debating the Dapsone. I know that I will still need to live a strictly gluten-free diet, but if I could end these occasional outbreaks it would be worth the risks.

Jogo

I was on Dapsone for 21 years. 100 mg.a day. It was a life saver. I only about a month ago have went gluten free. Dapsone controlled my symptoms COMPLETELY, except for random intense itching.

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I was on Dapsone for 21 years. 100 mg.a day. It was a life saver. I only about a month ago have went gluten free. Dapsone controlled my symptoms COMPLETELY, except for random intense itching.

I should add that I am on a strict gluten free diet now, 1 month! but still have random intense itching. I havr not been on dapsone for 7 months and DH hasnt shown up.

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