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. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      1

      New issue

      @Jmartes71, Sorry you've been feeling so poorly. Are you taking any medication to treat the SIBO? Are you taking any Benfotiamine? Benfotiamine will help get control of the SIBO. Thiamine deficiency has symptoms in common with MS. Have you had your gas appliances checked for gas leaks and exhaust fume leaks? Carbon Monoxide poisoning...
    2. knitty kitty
      - knitty kitty replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Blood Test for Celiac wheat type matters?

      European wheat is often a "soft wheat" variety which contains less gluten than "hard wheat" varieties found in the States. In European countries, different cooking methods and longer fermentation (rising or proofing) times allow for further breakdown of gluten peptides. Wheat in the States is a blend of hard and soft wheat. Gluten content can...
    3. trents
      - trents replied to Charlie1946's topic in Related Issues & Disorders
      38

      Severe severe mouth pain

      From my own experience and that of others who have tried to discontinue PPI use, I think your taper down plan is much too aggressive. It took me months of very incremental tapering to get to the point where I felt I was succeeding and even then I had to rely some days on TUMS to squelch flareups. After about a year I felt I had finally won the battle. Rebound...
    4. knitty kitty
      - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      38

      Severe severe mouth pain

      Talk to your doctor about switching to an antihistamine, and supplementing essential vitamins and minerals. Dietary changes (low carb/paleo) may be beneficial for you. Have you talked to a dietician or nutritionist about a nutrient dense gluten free diet? It's harder to get all the vitamins needed from a gluten free diet. Gluten containing products are...
    5. Caligirl57
      - Caligirl57 replied to Charlie1946's topic in Related Issues & Disorders
      38

      Severe severe mouth pain

      I’m pretty sure they do. I have been on myfortic, tacrolimus since 2021 for my liver transplant and added prednisone after kidney transplant. I’m going to try to cut back omeprazole to 20 mg a day and then after a week try to stop altogether. Thank you for your help.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,085
    • Most Online (within 30 mins)
      7,748
    kk007
    Newest Member
    kk007
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      New issue

      By knitty kitty · Posted

      @Jmartes71, Sorry you've been feeling so poorly.   Are you taking any medication to treat the SIBO?   Are you taking any Benfotiamine?  Benfotiamine will help get control of the SIBO.  Thiamine deficiency has symptoms in common with MS. Have you had your gas appliances checked for gas leaks and exhaust fume leaks?  Carbon Monoxide poisoning can cause the same symptoms as the flu and glutening.  Doctors have to check venous blood (not arterial) for carbon monoxide.  Are other inhabitants sick, or just you?  Do they leave the house and get fresh air which relieves their symptoms?  
    • knitty kitty
      Blood Test for Celiac wheat type matters?

      By knitty kitty · Posted

      European wheat is often a "soft wheat" variety which contains less gluten than "hard wheat" varieties found in the States.   In European countries, different cooking methods and longer  fermentation (rising or proofing) times allow for further breakdown of gluten peptides. Wheat in the States is a blend of hard and soft wheat.  Gluten content can vary according to where the wheat was grown, growing conditions, when harvested, and local preference, so a blend of both hard and soft wheat is used to make a uniform product.   I moved around quite a bit as a child in a military family.  I had different reactions to gluten in different areas of the country every time we moved.  I believe some wheat breeds and blends are able to provoke a worse immune response than others.   Since European soft wheat doesn't contain as much gluten as American wheat, you may try increasing your intake of your soft wheat products.  A minimum of ten grams of gluten is required to get a sufficient immunological response so that the anti-gluten antibodies leave the intestines and enter the bloodstream where they can be measured by the tTg IgA test.  Your whole wheat bread may only have a gram of gluten per slice, so be prepared...  
    • trents
      Severe severe mouth pain

      By trents · Posted

      From my own experience and that of others who have tried to discontinue PPI use, I think your taper down plan is much too aggressive. It took me months of very incremental tapering to get to the point where I felt I was succeeding and even then I had to rely some days on TUMS to squelch flareups. After about a year I felt I had finally won the battle. Rebound is real. If I were you I would aim at cutting back in weekly increments for two weeks at a time rather than daily increments. So, for instance, if you have been taking 2x20mg per day, the first week cut that down to 2x20mg for six days and 1x20 mg for the other day. Do that for two weeks and then cut down to 2x20mg for five days and 1x20 for two days. On the third week, go 20x2 for four days and 20x1 for 3 days. Give yourself a week to adjust for the reduced dosage rather than reducing it more each week. I hope this makes sense. 
    • knitty kitty
      Severe severe mouth pain

      By knitty kitty · Posted

      Talk to your doctor about switching to an antihistamine, and supplementing essential vitamins and minerals.  Dietary changes (low carb/paleo) may be beneficial for you.  Have you talked to a dietician or nutritionist about a nutrient dense gluten free diet?   It's harder to get all the vitamins needed from a gluten free diet.  Gluten containing products are required to be enriched or fortified with vitamins and minerals lost in processing.  Gluten free facsimile processed foods are not required to be enriched nor fortified.  So we have to buy our own vitamin supplements.   Glad to be of help.  Keep us posted on your progress!
    • Caligirl57
      Severe severe mouth pain

      By Caligirl57 · Posted

      I’m pretty sure they do. I have been on myfortic, tacrolimus since 2021 for my liver transplant and added prednisone after kidney transplant.  I’m going to try to cut back omeprazole to 20 mg a day and then after a week try to stop altogether. Thank you for your help.
×
×
  • 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.