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

Surely there is someone out there who can help?

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...

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

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,

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

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

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

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

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.

Joe,

Thanks for your advice.