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!!

@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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Terri, I am hoping to hear from my pulmonary doctor today as I need to know more about what he is thinking might be some good steps forward with my care. This site is so informative. Many thanks.

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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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@flib I know what you mean; it is hard for people to understand the debilitating aspect of the fatigue that comes and goes. Especially when we look fine on the outside. Have your family members look up this disease and read about it. Or let them see posts on this blog. I have had this disease & fatigue for years; but, because I maintain a cheery attitude my husband constantly forgets that I have it. He asks me to do things like take a long bike ride, etc. I did try to yesterday, but couldn't make it out of the neighborhood.

Liked by tdrell, ling123

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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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@flib We have what is called 'Pluff Mud' here in coastal S.C.It is found down by the water's edge. It is mud that you can sink up to your knees in. It is very thick and will suck the shoes right off of you. Plus it it very difficult to get out of it and people have been known to need rescue from it. When I am having a very bad fatigue day I tell my husband that I am a stick in Pluff Mud. That way he knows the level of fatigue is very bad and not to expect much from me.

Liked by tdrell

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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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@macjane, I am going to watch this movie this week. Thank you for sharing.

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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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@flib Terri @windwalker is right about encouraging your family to read about these topics. You can send them the links to articles that you want them to read so they don't feel puzzled about where to look or what words to use to search for them. Before my diagnosis with bronchiectasis and MAC, my husband used to complain about me not taking care of myself enough to ask for stronger cough suppressant from my doctor every time I coughed or tried to clear out phlegm that made a lot of noise. At that time, neither of us knew what I had. But I just knew that cough suppressant was not going to help. We would argue back and forth endlessly to no avail. Fortunately, my husband is a avid reader of any and all subjects that are of interest to him. After the diagnosis, he spent a lot of time reading about bronchiectasis and MAC and realized that using cough suppressant would have been the wrong thing to do in my situation. Nowadays, he would instead ask me whether I have tried to clear the phlegm out when he does not hear the noises for a while. I no longer need to explain myself and there is no more complaint, only concerns.

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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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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!

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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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I used to turn corners with no hands. I am getting on my stationery bike first thing after my appointment. I need to get some exercise. I also want to walk in water. I was told walk not swim until I feel better. Mucho thanks for your reply.

REPLY
@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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@macjane If you have access to a resistance pool, it will be even better. When you walk against the current, it gives you more workout without exerting yourself too much.

REPLY
@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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Thank you for your help. I ended up really losing my breath in the library with this cough so I am going to get to bed early I have been up with a very sick talk for three weeks now so this doesn't help. I will try the pool tomorrow after contacting my Pulmonary Doctor who I had hoped would have called today. I came upon some awful dust yesterday so that didn't help.

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@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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@macjane, please keep us posted.

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@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

Jump to this post

My pulmonary doctor suddenly will not see me for six weeks. Very discouraging.

REPLY
@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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Like your description of feelings

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@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

Jump to this post

How often were you being seen and does the Pulmonologist think you are more stable now?

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@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

Jump to this post

Every four months and I am not sure what he thinks.

REPLY
@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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@mary1944, Hello Mary. I am wondering how you are doing now. I hope that you are seeing some improvement. Did you end up staying on the 'Big 3' cocktail? -Terri

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