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

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