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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Flib | @flib | Mar 7, 2018
In reply to @colleenyoung "Welcome to Connect @reneeg. It must be so difficult to see your husband struggling with the..." + (show)
@colleenyoung

Welcome to Connect @reneeg. It must be so difficult to see your husband struggling with the side effects of the anti-biotics treating MAC. I am tagging a few fellow Connect members who can share their experiences with you and offer support along this journey. Please meet @katemn @Paula_MAC2007 @dianeray @heathert @kwilbur @donnavm @laneyk @e345l and @digmeme.

I also encourage you to read the main discussion about MAC where you'll meet everyone. Even reading through the messages may give you useful information, and of course you're always welcome to add your message here too. "(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS" - http://mayocl.in/2cwX36M

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Be sure to have your hearing checked as azithromycin cause hearing loss for me and I had to go off the drug.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 7, 2018
In reply to @softballqueen "I have had bronchiectasis for 2o years with chronic cough/mild shortness of breath. 2 years ago..." + (show)
@softballqueen

<p>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?</p>

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Welcome back, @flib. You're so right that treatment decision making is an individual choice that each person has to make with their health care team. Many factors play a role. I'm glad that you and your doctor investigated the cause of your hearing loss and that discontinuing the antibiotics was right for you.

We hadn't heard from you for a while. How are you doing these days?

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Jane S. Brown | @macjane | Mar 8, 2018
In reply to @colleenyoung "Welcome to Connect @reneeg. It must be so difficult to see your husband struggling with the..." + (show)
@colleenyoung

Welcome to Connect @reneeg. It must be so difficult to see your husband struggling with the side effects of the anti-biotics treating MAC. I am tagging a few fellow Connect members who can share their experiences with you and offer support along this journey. Please meet @katemn @Paula_MAC2007 @dianeray @heathert @kwilbur @donnavm @laneyk @e345l and @digmeme.

I also encourage you to read the main discussion about MAC where you'll meet everyone. Even reading through the messages may give you useful information, and of course you're always welcome to add your message here too. "(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS" - http://mayocl.in/2cwX36M

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Colleen, I spoke to someone at the Mayo Clinic yesterday and told them this support system is incredible. Thank you.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 8, 2018
In reply to @colleenyoung "Welcome to Connect @reneeg. It must be so difficult to see your husband struggling with the..." + (show)
@colleenyoung

Welcome to Connect @reneeg. It must be so difficult to see your husband struggling with the side effects of the anti-biotics treating MAC. I am tagging a few fellow Connect members who can share their experiences with you and offer support along this journey. Please meet @katemn @Paula_MAC2007 @dianeray @heathert @kwilbur @donnavm @laneyk @e345l and @digmeme.

I also encourage you to read the main discussion about MAC where you'll meet everyone. Even reading through the messages may give you useful information, and of course you're always welcome to add your message here too. "(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS" - http://mayocl.in/2cwX36M

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Thank you, Jane. I appreciate your telling them. We're pretty proud of the support and information exchange that happens on Connect. The collective knowledge is amazing. I also appreciate the respect and compassion that is found throughout the community.

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mary1944 | @mary1944 | Mar 9, 2018
In reply to @softballqueen "I have had bronchiectasis for 2o years with chronic cough/mild shortness of breath. 2 years ago..." + (show)
@softballqueen

<p>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?</p>

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My doctor recently took me off my meds for a couple of weeks to help me get my strength back. After labs he will put me back on them one at a time. And will change method of taking them. Thinks the rifampin is the culprit. I'm not going to live like this for the next year. I have always been active and this weakness and gastro issues are debilitating.

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irene5 Irene Estes | @irene5 | Mar 9, 2018
In reply to @softballqueen "I have had bronchiectasis for 2o years with chronic cough/mild shortness of breath. 2 years ago..." + (show)
@softballqueen

<p>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?</p>

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I have wrestled with quality vs quantity of life frequently! I get it!

REPLY
Jane S. Brown | @macjane | Mar 9, 2018
In reply to @softballqueen "I have had bronchiectasis for 2o years with chronic cough/mild shortness of breath. 2 years ago..." + (show)
@softballqueen

<p>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?</p>

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Mary, I was there for such a small time. I promised when my husband was in Vietnam that I would never ever say : "I know how you feel." People who never had a spouse in Vietnam didn't know how I felt. I wish I could just say hold on but that seems so barbaric. You are going through such a physical and emotional crisis. Is there anyone who can work with you on the emotional side of this disease? People who don't have this, try at times but they can be out in left field. I described my limited time as being in emotional hell and resented people who told me to shape up and "think of others." This group knows what that hell is and I truly wish you get the help and support you need right now.

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Jo Ann K | @jkiemen | Mar 9, 2018
In reply to @softballqueen "I have had bronchiectasis for 2o years with chronic cough/mild shortness of breath. 2 years ago..." + (show)
@softballqueen

<p>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?</p>

Jump to this post

I agree, rifampin I think is the one that seems the worse. I had side effects with rifabutin that were horrible. I was switched to rifampin and they are not as bad but I think I do get symptoms of aching in the legs, weakness and some muscle cramping and the fatigue. I still am stunned that there has been such slow progress in research in this area for better treatment

REPLY
Jane S. Brown | @macjane | Mar 9, 2018
In reply to @softballqueen "I have had bronchiectasis for 2o years with chronic cough/mild shortness of breath. 2 years ago..." + (show)
@softballqueen

<p>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?</p>

Jump to this post

You hit it right on the head for me Irene. Many thanks. Just learned the University of Michigan has no support group. do I feel lucky I came upon this group.

REPLY
Jane S. Brown | @macjane | Mar 9, 2018
In reply to @softballqueen "I have had bronchiectasis for 2o years with chronic cough/mild shortness of breath. 2 years ago..." + (show)
@softballqueen

<p>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?</p>

Jump to this post

Did anyone ever see The Doctor? It was good to see doctors like John Hurt play the real life doctor who went through this trauma and understand finally what his patients experienced. You laugh, you cry, you are sad, you are happy.................................it is by far one of my favorite films. Life can feel so darn unfair. Like our group, the connections of patients made me want to scream out and cry. I had just had brain surgery and more were concerned 25 years ago that I covered my huge scar than helping me.

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