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!!

@fransav

Taking the 3 antibiotics prescribed for MAC three times a week! I’m reduced to Jell-O on those three days, I’m so weak have diarrhea, and extremely fatigued. Anyone else have the symptoms.? I’ve been on these meds for about a month now. Thanks

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Self taught I am unable to respond to Mayo Connect members. It will saythe Server will not open because there are to many reconnects … I will ask my Family tonight to help me with this. Explains my absence in responding to members who write me.So sorry,Judy@DavisEyes

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@fransav

Taking the 3 antibiotics prescribed for MAC three times a week! I’m reduced to Jell-O on those three days, I’m so weak have diarrhea, and extremely fatigued. Anyone else have the symptoms.? I’ve been on these meds for about a month now. Thanks

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I’ve been on three meds for 4 months now and have discovered what helps with the nausea is spacing the drugs out with an hour in between. For the weakness and fatigue, I don’t push myself when it hits, nap when I can, and take advantage of the times I feel good to get things done. For me, the side effects have waned somewhat over time, and it’s tolerable. My main concern, since I take ethambutol, is ocular toxicity. It’s really important to get tested regularly. If you have any visual changes, you should see an eye specialist within 2 weeks.

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@fransav

I take MAI antibiotics 3 x week Mon, Wed & Thurs for 5 weeks & have diarrhea on all 3 days! Essentially I’m locked into my apt/bathroom those 3 days! Anyone else have this problem & if so, how long does it last?

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I’m also on triple antibiotics 3 x/ week and had diarrhea for the first couple of months but that has cleared up now, as has the fatigue. Have been on this regime for 4 months and no longer have side effects that stop me in my tracks. Hope this proves to be true for you too.

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@fransav

I take MAI antibiotics 3 x week Mon, Wed & Thurs for 5 weeks & have diarrhea on all 3 days! Essentially I’m locked into my apt/bathroom those 3 days! Anyone else have this problem & if so, how long does it last?

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Thank u so much for sharing that….Makes me feel so relieved!

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@fransav

And I’m on M a I trust three Days a week. Besides the diarrohea and the 15th on those three days I sometimes run a low-grade fever… Has anyone else had The low grade fever problem?

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Hello Fransav,

I was diagnosed one year ago and I am on the 3 drug cocktail every day since. It is my understanding that a low grade fever is from the illness not the drug. When diagnosed I was running 99-100 for 5 day and they asked me if I previously had fever and night sweats. My doctor still asks about both.
Just my experience.
Kate

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@fransav

And I’m on M a I trust three Days a week. Besides the diarrohea and the 15th on those three days I sometimes run a low-grade fever… Has anyone else had The low grade fever problem?

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Thanks Kate! I’ve only been on my three drug regimen for close to two months now and it’s just been knocking me for a loop. I have the runs every day that I take the meds then the following day I’m too weak to do anything, I’m exhausted, and sometimes I can’t go out at all! I’m sooooo fatigued & just feel,as if I have no life! Yeah you’ve been on the antibiotics for a year, are you feeling any better, do you still get all those horrible side effects? Also, is your MAI still active. Hope you’re feeling good and again thank you for answering.

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And I’m on M a I trust three Days a week. Besides the diarrohea and the 15th on those three days I sometimes run a low-grade fever… Has anyone else had The low grade fever problem?

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I take MAI antibiotics 3 x week Mon, Wed & Thurs for 5 weeks & have diarrhea on all 3 days! Essentially I’m locked into my apt/bathroom those 3 days! Anyone else have this problem & if so, how long does it last?

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@fransav

And I’m on M a I trust three Days a week. Besides the diarrohea and the 15th on those three days I sometimes run a low-grade fever… Has anyone else had The low grade fever problem?

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Yes. I always run a low grade fever

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@21042

Ive been diagnosd with mac and on the three antibiotics for a little over a week. Four days-fri,mon, wed., and fri. I have been the sickest of my life. I cant function this way. The nausea med makes me even worse. Can anyone suggest something to help me? Does it get better? Id rather not treat it than be like this.

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I have been having problems with my gut and all the antibiotics I’ve been taking. Does the ultra jarro dophilies 50 billion/cap cost you alot. Where can I find this?

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@21042

Ive been diagnosd with mac and on the three antibiotics for a little over a week. Four days-fri,mon, wed., and fri. I have been the sickest of my life. I cant function this way. The nausea med makes me even worse. Can anyone suggest something to help me? Does it get better? Id rather not treat it than be like this.

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@donut .. Donna, AS SOON as I started on antibiotics my Mayo doctor suggested I start on probiotics .. BUT I would also tell you that MANY of us with MAC also have GERD and must take medication for it. FIRST start taking probiotics and DO continue for basic gut health .. but then also Do some googling on GERD and see if your symptoms seem to necessitate a trip to a Gastroenterologist. I have noted the best best price I found for the probiotic below .. if anyone knows better .. jump in! Hope the below helps! Hugs! Katherine

From my File Cabinet:
BUT RECENTLY I FOUND the below.. if I had it to do over again I think I might simplify it and JUST do this one probiotic daily and see if I could get by with just the one .. see what happened. BECAUSE it has 50 Billion PLUS it has 10 different probiotic strains .. ALL in just ONE probiotic pill! Now it does have to be refrigerated .. but I think it is going to be worth it. Even though I am not on antibiotics at this time .. I still take a daily probiotic for basic health .. this is the one I am now taking.
Jarrow Formulas Ultra Jarro-Dophilus, 50 Billion Organisms, 60 Count *, KEEP REFRIGERATED TO MAINTAIN POTENCY 10 Probiotic Strains, Dairy & Gluten Free $30.07 https://smile.amazon.com/Jarrow-Formulas-Jarro-Dophilus-Billion-Organisms/dp/B00B0YCLXO/ref=sr_1_sc_1_a_it?ie=UTF8&qid=1499025625&sr=8-1-spell&keywords=ultra%2Bjarro%2Bdophilies%2B50%2Bbillion&th=1

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@21042

Ive been diagnosd with mac and on the three antibiotics for a little over a week. Four days-fri,mon, wed., and fri. I have been the sickest of my life. I cant function this way. The nausea med makes me even worse. Can anyone suggest something to help me? Does it get better? Id rather not treat it than be like this.

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@katemn Hi Katherine. So glad you posted this as I was just thinking of
buying some pro-biotics. I am on monthly antibiotics for the rest of my life, so
I figured that my gut is probably void of any gut bacteria what-so-ever. – Terri
M.
 

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@softballqueen

I have had bronchiectasis for 2o years with chronic cough/mild shortness of breath. 2 years ago my PFT dropped 10%, then 11% more last year and I am now @ 59%. This prompted my pulmonologist to do bronch which revealed MAC. I have been on 3 antibiotics for almost 2 weeks and can barely function. I’ve lost 7 lbs and have 0 appetite due to nausea all day long. I tried to play tennis over weekend and couldn’t and have to quit my softball team as the fatigue is overwhelming. I work 4 days a week at an administrative job that I love and wanted to continue 3 more years until I’m 65, but I often cannot make it through a full workday now. The treatment for me really is worse than the disease and to think about doing it for at least 18 months. Can you tell me your experience with the side effects and whether or not they lightened up?

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This is one reason I don’t want to take the 3 drug regimen.

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@softballqueen

I have had bronchiectasis for 2o years with chronic cough/mild shortness of breath. 2 years ago my PFT dropped 10%, then 11% more last year and I am now @ 59%. This prompted my pulmonologist to do bronch which revealed MAC. I have been on 3 antibiotics for almost 2 weeks and can barely function. I’ve lost 7 lbs and have 0 appetite due to nausea all day long. I tried to play tennis over weekend and couldn’t and have to quit my softball team as the fatigue is overwhelming. I work 4 days a week at an administrative job that I love and wanted to continue 3 more years until I’m 65, but I often cannot make it through a full workday now. The treatment for me really is worse than the disease and to think about doing it for at least 18 months. Can you tell me your experience with the side effects and whether or not they lightened up?

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Katherine were you able to work when taking the antibiotics?

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@softballqueen

I have had bronchiectasis for 2o years with chronic cough/mild shortness of breath. 2 years ago my PFT dropped 10%, then 11% more last year and I am now @ 59%. This prompted my pulmonologist to do bronch which revealed MAC. I have been on 3 antibiotics for almost 2 weeks and can barely function. I’ve lost 7 lbs and have 0 appetite due to nausea all day long. I tried to play tennis over weekend and couldn’t and have to quit my softball team as the fatigue is overwhelming. I work 4 days a week at an administrative job that I love and wanted to continue 3 more years until I’m 65, but I often cannot make it through a full workday now. The treatment for me really is worse than the disease and to think about doing it for at least 18 months. Can you tell me your experience with the side effects and whether or not they lightened up?

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@cindyrnc, Cindy, it is a VERY long story .. but when I was diagnosed in 2007 I had retired early .. then when I DID go on the antibiotics .. THAT is why I wrote the ORIGINAL post that is at the top of all the Main Page .. BECAUSE I did NOT have all the horrific side effects that I had read about .. and had held me back from starting them. Yes I had some .. but they were bearable and I was able to work around them. Each of our bodies are different .. we will react differently .. as you will read in these pages .. BUT our bodies settle down. We MUST remember .. our bodies are our friends .. our body is trying to help us heal .. WE must work with our bodies .. give it the tools it needs to help it heal .. NOT work against it by denying it the needed tools .. ie the antibodies it need to FIGHT the “nasty critters”! We NEED to supply our bodies with the “cannons” .. so if we need to ask our work to give us a “break” .. we do NOT have to be Super Woman .. ask them to work with us! Sound ok to you? Hope so! Hugs to you! Katherine

Liked by Brenda R.

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