Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Dapsone And Excersize...

MGoers37

By MGoers37
in Dermatitis Herpetiformis

Recommended Posts

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,901
    • Most Online (within 30 mins)
      7,748
    tessycork47
    Newest Member
    tessycork47
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.