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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,984
    • Most Online (within 30 mins)
      7,748
    MARYANN RICHARDS
    Newest Member
    MARYANN RICHARDS
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Scott Adams · Posted

      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      New Celiac Mama in My 30s

      By Scott Adams · Posted

      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Celiac and dermatitis herpetiformis has taken Me from Me

      By SusanJ · Posted

      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      New Celiac Mama in My 30s

      By knitty kitty · Posted

      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
×
×
  • 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.