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

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

mamat78

By mamat78
in Dermatitis Herpetiformis

Recommended Posts

mamat78 Apprentice
mamat78
Posted

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.

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

Celiac.com Sponsor (A8-M):


pricklypear1971 Community Regular
pricklypear1971
Posted

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

There are some alternative therapies you can try.

squirmingitch Veteran
squirmingitch
Posted

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.

mamat78 Apprentice
mamat78
Posted
  • Author

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? 

 

pricklypear1971 Community Regular
pricklypear1971
Posted

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.

mamat78 Apprentice
mamat78
Posted
  • Author

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! 

mamat78 Apprentice
mamat78
Posted
  • Author

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! 

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

Once again, I agree with Prickly.

mamat78 Apprentice
mamat78
Posted
  • Author

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. 

sisterlynr Explorer
sisterlynr
Posted

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. . . 

kmag Rookie
kmag
Posted

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.

mamat78 Apprentice
mamat78
Posted
  • Author

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. 

squirmingitch Veteran
squirmingitch
Posted

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

sisterlynr Explorer
sisterlynr
Posted

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.   :)

mamat78 Apprentice
mamat78
Posted
  • Author

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.

mamat78 Apprentice
mamat78
Posted
  • Author

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. 

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Get tested for vitamin deficiencies. Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    2. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    3. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not...
    4. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does m...
    5. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748
    bigwave
    Newest Member
    bigwave
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • 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.