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Dapsone And Excersize...

MGoers37

By MGoers37
in Dermatitis Herpetiformis

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MGoers37 Rookie
MGoers37
Posted

Hi, to start this off first i'll give a little information about myself since im new to these forums...

Im a 17 year old, male, actively engaged in varsity swimming, muscular build, who had just been diagnosed with dermatitis herpetiformis two weeks ago. I had first noticed symptoms in october of this year, so from what ive been reading the doctors caught it somewhat early, and also that it's rare for someone as young as me to have this.

Now my question is concerning the use of dapsone. wherever i have read the side effects, dapsone in more cases than not, decreases the amount of hemoglobin in the bloodstream by at least 2 grams. My doctor has reccomended i take dapsone immediately after im done with my regiment of prednisone. Now i swim 6 days of the week, over 3 miles a day, and i work to the point of sheer exhaustion every practice. im wondering if it's wise to take the dapsone because of this, i dont want to pass out or swim like crap the rest of the year especially because our sectional championships are coming up soon (3 weeks]. The bumps on my skin arent that bad currently, but i think i'll probably have a relapse as soon as im off the prednisone. I have dealt with it for months with no medication, but the itch, i think, slowly degrades your sanity...haha.

any feedback?

thanks

p.s. after posting this i realized i spelled exercise wrong....I know im retarded

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mtdawber Apprentice
mtdawber
Posted
Now i swim 6 days of the week, over 3 miles a day, and i work to the point of sheer exhaustion every practice. im wondering if it's wise to take the dapsone because of this, i dont want to pass out or swim like crap the rest of the year especially because our sectional championships are coming up soon (3 weeks]. The bumps on my skin arent that bad currently, but i think i'll probably have a relapse as soon as im off the prednisone.

Hi and welcome. I haven't found that I am more/less tired from taking dapsone and I was very concerned before I started it. Being a red head I fight my levels anyway but so far, so good. It's a personal decision for everyone - that's just what I've noticed. As with everything in life, everyone is different.

MGoers37 Rookie
MGoers37
Posted
  • Author
Hi and welcome. I haven't found that I am more/less tired from taking dapsone and I was very concerned before I started it. Being a red head I fight my levels anyway but so far, so good. It's a personal decision for everyone - that's just what I've noticed. As with everything in life, everyone is different.

Thanks for the input. As of the last post i have noticed a very very bad relapse ( within a week i had as many spots, if not more. as when i started taking the prednisone). Im going to my normal doctor this week sometime to get his input on the situation since he used to swim as well. The dermatologist i went to, although very bright, seemed to be padding the situation. first he told my mom over the phone that there are NO side effects whatsoever, then when i talked to him in person said that i wouldn't get any side effects but if i did they'd notice it in the blood screen that was performed every two weeks. from what i understand most people get some sort of difference in their blood screen after taking the dapsone, whether serious or just minor. the derm seemed to be bsing me to some extent, instead of giving me a strictly facts type of deal...

i'll probably just end up waiting till the end of sectionals, im sure i can last another 13 days

MGoers37 Rookie
MGoers37
Posted
  • Author

well going to then doctor's to find out if dapsone will be okay no longer matters because im finally spot free! That's right, after a month and a week of the gluten free diet the spots are basically gone [i get one or two every now and then]. Im so relieved the spots are gone, it was getting really bad.

does anyone else have success stories they'd like to add?

  • 2 weeks later...
Granny Garbonzo Apprentice
Granny Garbonzo
Posted

Sorry you've been through so much. My daughter was on swim team in Moscow Idaho in Middle School when we found out that the rash she had was from gluten. My mother nearly died and was down to 80 lbs from her usual hefty self, she was being fed intraveineously. When we realized that our health problems were related to gluten, we stopped it immediately...but it took quite a long time before her rash went away. It kept coming back because we were not fully aware of all the long list of things that contain gluten, and I was going to school and we had no money and few resources in that little town.

What I'm trying to say is that you may get the rash back now and then from some bit of gluten you get here or there, but I think drugs like prednisone and dapsone are extreme health hazards in my book. Have you ever read the list of health hazards associated with these drugs? We used natural immune system builders that can be learned on your own from books and online info or if you can afford it, you can see a natural doctor or a doctor of traditional chinese medicine.... Frankly, I think it is important for us with celiac disease to learn as much as we can about how we can build up our body through diet and exercise and things like vitamins and herbs. By taking this route, instead of depending on doctors, you can take control of your own health and know when seeing a doctor is useful and when it is not.....I am nearly 50 yrs old now, and my daughter is 28. We only see a doctor maybe every three years or so. We are both celiacs as are my daughter's two little girls. We work hard at learning all we can to care for our own health. If I would have listened entirely to doctors, I and my family would not enjoy the outstanding health we do today. Just this past year I was accepted for long-term life insurance by two well known companies....that's impressive for a 50 year old woman....they're banking on me living into my 80s and 90s. You can too if you work at it a little....sounds like you already exercise, that's more than most people...now think about studying and learning all about your immune system and your cardio system, etc. You will have kids of your own someday that may be celiacs too...the more you learn, the better life you will be able to have now and with your future family.

Best to you

Granny

lovegrov Collaborator
lovegrov
Posted

I took dapsone for more than 20 years for DH and mine disappeared immediately after going gluten-free. It usually takes months but honestly I never took another dapsone after going gluten-free.

richard

VegasCeliacBuckeye Collaborator
VegasCeliacBuckeye
Posted

I take 1 pill (25 mg) a day for DH.

I also work out 4-5 times a week (everything from treadmill, weight lifting and soccer). It has not affected my "athletic life"...

BB

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