1. < MAC & Bronchiectasis

MAC antibiotics and side effects

Posted by reneeg @reneeg, Oct 15, 2016

Hello. My name is Renee and I live in Australia with my husband who was diagnosed with MAC in Sept 2014. At the same time he was also diagnosed with Hodgkins Lymphoma, COPD and hereditary emphysema. He also has adrenal failure we're told from the chemo. He is currently in hospital on a iv antibiotic drip of tigecyline and oral antibiotics. My question for those of you that have taken rifubutin and moxifloxcin. How long did your side effects last? Did they ever diminish or completely go away? One of the reasons he is in hospital is due to the severeness of his side effects. Constant headache, muscle aches, body temp regulation and shortness of breath. He has been on the tablets now for a 4 weeks. Thank you!!

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dulwich | @dulwich | Jul 11, 2023
In reply to @lilianna "thank you, dulwich, for your response. Was the discoloration showing as spots or just your skin..." + (show)
@lilianna

thank you, dulwich, for your response. Was the discoloration showing as spots or just your skin color changed all over? One more question, when you were on clofazimine, how often did you have blood work done for liver function and kidney function?

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My skin looked orangey pink all over and all age spots darkened Nails were also slightly pink
Did blood tests monthly and the one time. I had a serious problem- plummeting platelets from rifampin, I just happened to go earlier at 3 weeks for convenience, which was lucky
However that is a rare issue so I would say monthly is more than fine unless you feel unwell
Clofazimine itself is unlikely to cause lab changes so testing is more for the other meds

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1 reply
lilianna | @lilianna | Jul 12, 2023
In reply to @dulwich "My skin looked orangey pink all over and all age spots darkened Nails were also slightly..." + (show)
@dulwich

My skin looked orangey pink all over and all age spots darkened Nails were also slightly pink
Did blood tests monthly and the one time. I had a serious problem- plummeting platelets from rifampin, I just happened to go earlier at 3 weeks for convenience, which was lucky
However that is a rare issue so I would say monthly is more than fine unless you feel unwell
Clofazimine itself is unlikely to cause lab changes so testing is more for the other meds

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hello,
thank you for your response; so far, its been a month, I do not see any color change; regarding rifabutin- I had to stop it because it caused really bad liver function . How long did you stay on clofazimine- my doctor says 12 months if i tolerate it. The ID doctor said that all blood work since I stopped rifabutin should be done with my family doctor with the frequency she thinks is appropriate. This sounds strange to me; who tests you for the meds effects?

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dulwich | @dulwich | Jul 12, 2023

Was on clofazimine 100 mg for almost 3 years
Re blood tests, is your liver okay now?
Are you still on azithromycin?
Might still want to keep an eye on liver function, if so. Maybe monthly then decrease frequency if stable?

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suzanne11 | @suzanne11 | Jul 15, 2023
In reply to @katemn "Hello Queen, Welcome to the Forum! I also have Bronchiectasis and MAC/MAI .. plus Reactive Airway..." + (show)
@katemn

Hello Queen, Welcome to the Forum! I also have Bronchiectasis and MAC/MAI .. plus Reactive Airway Disease. Truth is I don’t think anyone knows which comes first the chicken or the egg. Did I have the Bronchiectasis first and it became the breeding ground for the MAC .. or the other way around .. who know .. and who cares .. It’s just there and we all have to deal with it!

For myself I was diagnosed in 2007 but was so very afraid of the necessary antibiotics. At the time I did NOT have the support and information of a Forum like this so fear led me to not start the antibiotics until I got a 2nd serious abscesses mycobacterium. After being diagnosed with the 2nd mycobacterium I had no choice and began the journey taking 4-5 antibiotics for 30 months. I lost 18% of my body weight for which I was FORCED to eat my beloved ice cream every night to maintain my weight!

I can only speak for myself .. but yes I was more tired .. I needed a good 10 to 11 hours of sleep at night .. the antibiotic Rifampin did create sleep disturbances for me .. I “ate to live” rather than “lived to eat” but I made the effort that whatever went into my body was healthy and nutritious for my body.

I have now been “stable” and off antibiotics since May 2014. Was it all worth it? You bet!! I am SO aware that we are all given just one body in this lifetime .. and we must take good care of it .. so it can take care of us! During this initial period just know that we are all on this journey together .. keep coming back to this Forum .. and to the Forum at
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=7
.. there are really good supportive people on both Forums! Read as much as you have the energy to .. knowledge is power. For now .. just put one foot in front of the other .. it DOES get better! I KNOW because it is GREAT for me! I have fun .. I travel .. and I love life today .. tomorrow .. and EVERY day! Sending you a Big Hug because I know it is tough right now! Katherine

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Hi Katherine,

My name is Suzanne. I am so new to all of this. I had may first positive Mac test on may of this year, but my doctor was suspicious after looking at my lung Cat scan in December. To be honest I am little nervous. It was very helpful to read your blog. I am very happy for you. How are you feeling now?
Thanks

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suzanne11 | @suzanne11 | Jul 15, 2023
In reply to @suethenanny "Hi Renee, you may wish to join us on NTMir Australia's private facebook group. There are..." + (show)
@suethenanny

Hi Renee, you may wish to join us on NTMir Australia's private facebook group. There are others there with similar issues and you may find support through them as well. Also the Lung Foundation Australia has a support group for those with NTM, most of us are members on both platforms. I'm a Kiwi.

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Hello, would you please sure the link.
Thanks,
Suzanne

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suethenanny | @suethenanny | Jul 15, 2023

Hi Suzanne, are you also in Australia or New Zealand?

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kathymac | @kathymac | Dec 28, 2023
In reply to @lilianna "If anybody took clofazimine , please respond to this email and tell me if you had..." + (show)
@lilianna

If anybody took clofazimine , please respond to this email and tell me if you had side effects and how you dealt with them. I have been on it, among a round of amykacin infusion and azithromycin (still on it since April) and I noticed my hair falls out, and quite a lot. I also read that the discoloration of skin is common- it scares me.
Thank you

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I took clofazimine for about a year and a half. Yes, my skin darkened alittle (more like a tan for me!) No side effects I noticed with that. I did have partial hearing loss with the amykacin infusion. I stopped after 5-6 months.
Hope this helps!

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greeneyes8 | @greeneyes8 | Dec 29, 2023

Hi Lilliana, my name is Gayle. Icstarted on clofazimine in August 2023, along with azith and ethambutol. I was on rifampin but it caused acute kidney failure. U recovered 50 % of my kidney function so here I am on clofazimine as yhe 2nd tier drug. I was upset at the possibility of my skin changing color but it has been minimal. A little pink is all. No other side effects. I have both MAC and bronchiectasis. 4 months into it and my sputum samples are already looking better. Being treated at National Jewish, Dr Daley is awesome. So is Dr. Goldstein for the bronchiectasis. I was overreacting for nothing. The clofazimine is seemingly doing the trick. I hope this helps with your clofazimine concerns.

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