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Dapsone Experiences? (from A Newbie)

chestnut

By chestnut
in Dermatitis Herpetiformis

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Dlapham celiac & DH Newbie
Dlapham celiac & DH
Posted
Well, I am glad that I never experienced that although I do have a hard time gaining weight. Everyone gives me a hard time and I tell them I eat I eat LOL. I just got my blood test result, had to go in for a pulmonary test for my Asthma, she told me it was positive. Just makes me wonder for 20 years my body must have been doing battle with intself inside and out, with no one being the wiser. Now comes the fun part going gluten free. I will though for the benefits it does create, just going to be an adjustment. We will see how my blood test go on a 100mg a day. I am just happy because for the first time in 20 years I am not afraid to shake someones hand. Take Care!!!

Nickie,

Richard's experience is very much like mine. I took dapsone for 20 years+- 1 or 2 and it did wonders for my D/H. In the mid 80's most dermatologists did not know about C/D. I had the one of the best in Oklahoma City. He knew I had D/H by visual inspection, but it was backed up by lab tests. I also was dieing of malnutrition last summer. I have had symptoms of C/D for 58 years, but no one knew what they meant. As was stated, if you have D/H you DO have celiac. I/we tell you this so you can avoid what we have had to go through. Things like pernicious anemia, chronic diarrhea, depleted red blood cells, regular anemia, liver function problems(dapsone induced) impotence(Men only), weight loss, low cholesterol that induced depression and anxiety and the list goes on.

Please listen to those who have been years on this road. Even though Dapsone is a great way to control outbreaks, (I still have to use 25 mg. a day, down from 50 mg a day). I am going to stop that when I am able to do so. I have been gluten-free for 6 months and have had big improvement in my blood count.

Please read up on dapsone at www.webmd.com Or I think that is the correct site. It is not a replacement for a gluten-free diet. Dapsone causes many problems, and exacerbates many of the problems caused by c/d. Had I known then what I know now, I would have stayed on the gluten-free diet in the 80's. But I didn't know and I didn't stay on it, and have paid a price. One price for me that I haven't heard anyone else mention is that I tore the supraspinatus tendon in my right shoulder, better known as a rotator cuff tare. And now am about to have surgery on the left shoulder for a torn biceps tendon. My orthopedist said that c/d is most likely the underling reason they tore.

Please understand that I know some have had less problem then I have. But, please be careful, your health is important, and once lost can be hard to recover.

I have said enough, good luck.

PS. If your doctor really does not know that D/H is CAUSED by celiac disease, I would find a new doctor. Just go to the doctor rant section of this site and read about the abuse doctors have put some through.

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Nickie Newbie
Nickie
Posted

Thanks

I think I truly do know more than my doctor about celiac disease/dh, because of reading others ecperience and researching on my own. My doctor does listen to me, in fact I said I want the test she had no problems running the blood tests, they came back weakly positive, so I am a little confused on what that means. I put a call into her to have her explain the results to me, no call back yet. I definitely knew more than the nutritionist that I was referred too. I think I taught her a few things. As far as getting a different doctor it is hard for me. My husband is Air Force therefore we have to go to the base clinic in order to get any care. If we lived away from a base I would then get to choose my own doctor. Plus I have to go through getting a referral to any other doctor I want to go to. One question about the cholesterol though, I just had mine done and came back high actually so a little confused on that one. Of course prior to being diagnosed I ate out about 3 to 4 days a week, so got a lot of junk and fattening food. Not sure if that will change since I have gone gluten free and am not eating out at all. My HDL is higher though so that is good. My plan is to definitely stay gluten free as I do not want to stay on dapsone, I take enough other medication for my asthma, that is quite enough. I have been gluten free since March 10th so I am on my way. Thank you all for your information and time.

Dlapham celiac & DH Newbie
Dlapham celiac & DH
Posted
Thanks

I think I truly do know more than my doctor about celiac disease/dh, because of reading others ecperience and researching on my own. My doctor does listen to me, in fact I said I want the test she had no problems running the blood tests, they came back weakly positive, so I am a little confused on what that means. I put a call into her to have her explain the results to me, no call back yet. I definitely knew more than the nutritionist that I was referred too. I think I taught her a few things. As far as getting a different doctor it is hard for me. My husband is Air Force therefore we have to go to the base clinic in order to get any care. If we lived away from a base I would then get to choose my own doctor. Plus I have to go through getting a referral to any other doctor I want to go to. One question about the cholesterol though, I just had mine done and came back high actually so a little confused on that one. Of course prior to being diagnosed I ate out about 3 to 4 days a week, so got a lot of junk and fattening food. Not sure if that will change since I have gone gluten free and am not eating out at all. My HDL is higher though so that is good. My plan is to definitely stay gluten free as I do not want to stay on dapsone, I take enough other medication for my asthma, that is quite enough. I have been gluten free since March 10th so I am on my way. Thank you all for your information and time.

I can understand your doctor situation, because my dad was in the Air Force until I was 11 years old. I went to the hospital on the Tinker Air Force base which at that time was a very good hospital, but my mother had to arch her neck a few times to get the care we needed.

If your doctor will listen to you and help you with the tests you want, in some ways, that is worth more then her having a lot of knowledge about the disease. That is kind of where my doctor is.

I don't know why cholesterol is low in some celiacs and high in others. I wonder if it has to do with how advanced the disease is in the person as well as how much cholesterol they make normally. Mine has historically been at around 165, but last summer I was down to 100.

I have seen a rather large amount of new research of old research studies where they look at the long term effects of LOW cholesterol on the health and life expectancy of the study subjects. It is very interesting that as cholesterol levels go below 160, the incidents of depression, suicide, anxiety, violent behavior, sudden death, and stroke actually goes UP, and in people over 50 heart attacks go up as well. They also find that the LDL is not a damaging as thought. If you type in "dangers of low cholesterol" on the Google search engine, you will find a lot of interesting information.

I have an 8 page paper that a doctor I know put together. He is an MD that is researching the natural and none invasive methods. If you would like a copy, contact me by private message and give me your fax or email and I will get it to you. It is most informative and interesting.

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