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!!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

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?

Jump to this post

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

REPLY
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

Jump to this post

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?

REPLY
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?

REPLY
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

Jump to this post

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

REPLY
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.

Jump to this post

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

REPLY
suethenanny | @suethenanny | Jul 15, 2023

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

REPLY
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

Jump to this post

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!

REPLY
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.

REPLY
blm1007blm1007 | @blm1007blm1007 | Oct 27 12:21pm
In reply to @irene5 "But you tried! Last time I got on a bike a few years ago I fell..." + (show)
@irene5

But you tried! Last time I got on a bike a few years ago I fell off! When I was a little girl in the 50’s I rode “no hands” down the middle of the street while my dad took movies! Where did that girl go?:) I think the fact that we keep trying in spite of “debilitating” fatigue and everything else MAC says a lot about us!

Jump to this post

Oh Irene....while seaching for responses about what to eat at the very same time you take your antibiotics somehow I came across your post about bike riding. I had forgotten about those days when I could ride the bike with "no hands." Yes, in the early 50's and up those steep hills I was so proud of myself........ that I could pump/pedal hard my way to the top.
However I have never forgotten my Dad holding the back of the bike seat, with us being in the middle of a quiet street, for a second on my first try to ride the two wheeler and my taking off immediately, with Dad's hand off the seat, on my own by myself. Thinking of Dad in that moment in time sure reaches into the soul and makes one smile. So thanks for mentioning "no hands."
So now on to seeing what others found best to do with taking the antibiotics at the same time as food. I read to be careful of things with calcium. magnesium, and aluminium at the time you take the antibtiotics and about a 3 hour rule (high fiber foods before and after) of what to do after taking and the 6 hour rule before taking them again. And then there is also mentioning not to take fermented and dairy products close to the time you take the antibiotics due to possibly working against the antibiotics too soon.???? My thoughts this time are to take them in the morning with food (low fiber food) when I start the Azithromycin and Ethambutol. For me it's just the two antibiotics that Dr. McShane prescribed...at this point in time. Waiting to take them after I understand all, made a plan A and have had eye and hearing baselines. So glad you are still blogging and sharing with us, me, in 2024 and appear, apparently, well enough to do so.
Barbara

REPLY
1 reply
irene5 Irene Estes | @irene5 | Oct 27 12:28pm
In reply to @blm1007blm1007 "Oh Irene....while seaching for responses about what to eat at the very same time you take..." + (show)
@blm1007blm1007

Oh Irene....while seaching for responses about what to eat at the very same time you take your antibiotics somehow I came across your post about bike riding. I had forgotten about those days when I could ride the bike with "no hands." Yes, in the early 50's and up those steep hills I was so proud of myself........ that I could pump/pedal hard my way to the top.
However I have never forgotten my Dad holding the back of the bike seat, with us being in the middle of a quiet street, for a second on my first try to ride the two wheeler and my taking off immediately, with Dad's hand off the seat, on my own by myself. Thinking of Dad in that moment in time sure reaches into the soul and makes one smile. So thanks for mentioning "no hands."
So now on to seeing what others found best to do with taking the antibiotics at the same time as food. I read to be careful of things with calcium. magnesium, and aluminium at the time you take the antibtiotics and about a 3 hour rule (high fiber foods before and after) of what to do after taking and the 6 hour rule before taking them again. And then there is also mentioning not to take fermented and dairy products close to the time you take the antibiotics due to possibly working against the antibiotics too soon.???? My thoughts this time are to take them in the morning with food (low fiber food) when I start the Azithromycin and Ethambutol. For me it's just the two antibiotics that Dr. McShane prescribed...at this point in time. Waiting to take them after I understand all, made a plan A and have had eye and hearing baselines. So glad you are still blogging and sharing with us, me, in 2024 and appear, apparently, well enough to do so.
Barbara

Jump to this post

Thanks Barbara! And you made me smile indeed!! Irene

REPLY
View MoreView Less
Please sign in or register to post a reply.