Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Can 50 Mg Of Dapsone Really Make Me Feel This Way?
0

16 posts in this topic

I posted on an old thread but I think I need to start a new one. 

 

I just thought about it yesterday that I think the Dapsone that I am taking (only 50 mg/day) is really affecting me. I was expecting nasea and so when I didnt feel that way I figured I wasnt experiencing any side effects. Well, I am feeling more and more crappy as the time goes on. I have only been on it for 11 days but am feeling like I am walking around in a fog, extremely tired within 1/2 hour of taking it and my muscles feel like they are so weak. I almost feel like you would would feel if you had a bad flu.

 

My questions are these:

 

Does anyone else relate to these symptoms?

 

Should I quit taking it or maybe try taking it at night instead of the morning? 

 

Can the symptoms get worse over time? (even though I have only been on it for less than 2 weeks-these feelings have been the last 3 days which also correlates with starting back up on gluten incase I need a skin retest)

 

*At first I thought it was from going back on gluten but today I made sure I only ate a banana and an egg when I took my dose of dapsone and I still feel this way...I start to feel like head is clear around dinner time.

0

Share this post


Link to post
Share on other sites


Ads by Google:

You need to contact your doc ASAP. Dapsone can have severe side effects....

There are some alternative therapies you can try.

1

Share this post


Link to post
Share on other sites

I agree with Prickly. You need to contact your doc ASAP. Dapsone is not something you play around with. You may be one of those who can not tolerate it. There have been quite a number who have tried it but had too severe of side effects to be able to continue with it. Or maybe your dosage just needs to be lowered. But I would let your doc know right away! Dapsone can do some awful things and it can do some great things but awful is not an option. It can cause severe anemia.

0

Share this post


Link to post
Share on other sites

THanks for the reply's. I am not going to take it until I see my doctor again which is tuesday. I am definately feeling weird, even after 12 hours although I am up and around now. I cant get in very easily to my doctor so is Tuesday fine? Or is this something I should be trying to get in right away? 

 

0

Share this post


Link to post
Share on other sites

Just stop taking it and see what happens. That's what the doc will tell you to do, most likely. Probably some blood work.

When I've had reactions to meds they always say stop taking it, not much after that. In this case if the symptoms go away after you stop at least you'll know the dapsone is doing it and can ask for alternatives.

1

Share this post


Link to post
Share on other sites




yes I have stopped. Still feel really shaky and weak.I had to turn the heat down as I feel overheated or something too. Just all around yuck!  I am at work today so hopefully I can just work through it as I am a middle school teacher! No time to slow down here! 

0

Share this post


Link to post
Share on other sites

yes I have stopped. Still feel really shaky and weak.I had to turn the heat down as I feel overheated or something too. Just all around yuck!  I am at work today so hopefully I can just work through it as I am a middle school teacher! No time to slow down here! 

0

Share this post


Link to post
Share on other sites

Once again, I agree with Prickly.

0

Share this post


Link to post
Share on other sites

Well, I contemplated trying to get into see my dr today after work as I was still feeling very weak, muscles were tired and then my pee turned really dark (that actually started last night but I paid more attention today). Towards the end of the day though, I started to feel a little better and managed to actually have energy for the afternoon of my work day. I am hoping its starting to leave my system (was taken at 8 am sunday). I am assuming, though, that  I will likely be getting more blood work tomorrow. 

0

Share this post


Link to post
Share on other sites

Well, I contemplated trying to get into see my dr today after work as I was still feeling very weak, muscles were tired and then my pee turned really dark (that actually started last night but I paid more attention today). Towards the end of the day though, I started to feel a little better and managed to actually have energy for the afternoon of my work day. I am hoping its starting to leave my system (was taken at 8 am sunday). I am assuming, though, that  I will likely be getting more blood work tomorrow. 

 

I just signed in and saw your question.  You should have called your doctor ASAP or gone to the ER.

 

You are describing exactly what my PCP told me could be a severe reaction to Dapsone from the aches, sore throat, weakness to the dark yellow urine.  Your kidneys, liver and acute anemia are what they monitor on me, every month.  I sure hope that you did see your doctor and are ok.

 

I am fortunate that Dapsone works for me without ill effects.  Just this week, all my blood and urine tests are good.  

 

Please let us know how you are. . . 

0

Share this post


Link to post
Share on other sites

The dark urine is kind of scary.  I would definitely have stopped taking it at that point.  I've tried twice to take Dapsone at 50mg dose and just couldn't keep at it for more that 10 days because I felt like such crap.  It was slightly better the second time, but it really boiled down to not being able to tolerate exercise (which is a big part of my life).

 

I hope you are well.

0

Share this post


Link to post
Share on other sites

I just signed in and saw your question.  You should have called your doctor ASAP or gone to the ER.

 

You are describing exactly what my PCP told me could be a severe reaction to Dapsone from the aches, sore throat, weakness to the dark yellow urine.  Your kidneys, liver and acute anemia are what they monitor on me, every month.  I sure hope that you did see your doctor and are ok.

 

I am fortunate that Dapsone works for me without ill effects.  Just this week, all my blood and urine tests are good.  

 

Please let us know how you are. . . 

I did go back to the doctor on tuesday, 2 days after I went off of dapsone. By the time I went to my doctor I was feeling better but it did take quite a while to get out of my system. In fact, up until yesterday, I was still unusually tired. She didn't seem too concerned especially because I was feeling better after coming off of the drug. The dark urine actually started after my final dose and after I had decided that things were not going well! 

 

It turned out, as well, that the doc didnt do the swab correctly so she only tested for some other skin things. Now, I am waiting on a dermatologist appointment but in the mean time I am taking the dapsone 5% topical. I hope the side effects don't go into my system the way they did last time. So far, so good. I think. 

0

Share this post


Link to post
Share on other sites

I would be very interested in hearing how the Dapsone topical does for you in all respects. That might be something I could do myself. Please keep us updated on how that does okay?

Thanks

0

Share this post


Link to post
Share on other sites

Glad that you are better!  My PCP would have done blood and urine tests stat, I know.  I already had anemia, low iron, etc. so she watches me closely.  Good news for me is that my April stats are good, with blood and iron back to normal.  Yipee!  

 

I think the topical would be great and have considered asking if I can switch. . . . let us know how it works for you.   :)

0

Share this post


Link to post
Share on other sites

well, so far I am not seeing any side effects from the topical dapsone so that is good news. As far as the working factor, it is hard to tell becuase it does seem better but then I am always wondering if I am imagining things in hopes that they are working! It still has itchy times but again, like the oral dapsone, the itch seems less intense. I will let you know in a few more days.

0

Share this post


Link to post
Share on other sites

So, 4 or so days on dapsone topical and then now I have misplaced it! I haven't had any since yesterday AM and my legs are on fire tonight! It was definately helping. Actually, even more than I thought until I was off for 24 hours. New breakouts happening tonight. So frustrating. I have 4 kids and have a feeling that one of them either grabbed it to look at or cleaned up an area and moved it! I have been looking all evening for it. 

 

On a good note, I got my referral already for a dermatologist who will hopefully do a DH skin test properly! That is on May 6th. 

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,341
    • Total Posts
      920,478
  • Topics

  • Posts

    • As a GI specialty nurse who also has celiac I can tell you that it can not be diagnosed by CT and rarely unless you have severe disease can it be diagnosed by colonoscopy.  Those that have had it diagnosed by colonoscopy have such because their MDs were above to get into the small bowel from the bottom and take biopsys.  Celiac damage is not seen in the large intestine.  Also many people do not have diarrhea, many have constipation or a 50/50 mix between the two.  Celiac has 300 connected symptoms and sometimes no symptoms at all.  It's called the " great pretender" because of this.
    • Okay, thanks! I am 24 but my husband and I don't plan on having kids. However, the more I thought about it, the more I think I should get one for my brother's sake. Especially after my doctor's office called this evening to say my bloodwork tested positive for Celiac. Guess I will be on this forum longer than I thought!
    • You just got diagnosed Celiac and are wondering how serious this really is. What if there is just a little gluten in your food? What if you use the same toaster for your gluten-free bread as your wife's/husband's regular bread? What if those french fries are gluten-free but they fry them in the same fryer as those nice gluten coated onion rings? View the full article
    • Hi, I've never been on a forum before but thought I might find some answers here.  I have never been tested for celiac but a nurse practitioner I saw a few years ago told me she thought I would benefit from a gluten free diet.  At first, I thought I could never do this but after some encouragement I did try.  I did feel much better after going gluten free.  She never tested me for celiac. I turned 50 years old last year and I had a colonoscopy for the first time and had three polyps removed.  The surgeon said that my colon looked like I was a chronic laxative user.  I haven't used a laxative for a very long time.  I was at the time drinking a natural tea to help me to have bowel movements.  Before starting the tea I had always had difficulty with bowel movements and never had them once a day but with the tea I was able to go once a day. At the end of last month I developed severe pain after I would eat (I had my gallbladder removed at the age of 19).  One night the pain got so bad my husband had to drive me to the ER.  My liver functions were high as well as a few other things.  They did a CT scan of my abdomen and pelvis that showed wall thickening of my transverse colon and minimal irregularity involving the transverse colon.  My descending and sigmoid colon were collapsed.  There were a few tiny mesenteric lymph nodes present on the right.  They diagnosed me officially with colitis but said that most likely I had a gallstone (even though I don't have a gallbladder) that had come from the liver and had gotten stuck in the common bile duct (it did not show up on the CT scan).  I usually have a high ferritin level too.  I've been home from the hospital stay for about a month now and still have tenderness in the epigastric area. Some of this may not have anything to do with celiac but was wondering if anyone has been diagnosed with celiac by CT scan or colonoscopy or if anyone has had the same problems that I have had and found out what has caused it.  I cannot see the gastroenterologist who saw me in the hospital for a couple of months.  Can you have celiac and not have diarrhea as I am just the opposite? Any help would be appreciated!  Thanks!  
    • I had an acne flair up after going gluten free but it ended up improving and some long-term back acne I had been dealing with actually went away.  I think going gluten free was a shock to my system and at first I actually felt worse but after about a month things got better. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,411
    • Most Online
      1,763

    Newest Member
    Aly46
    Joined