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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irene5 Irene Estes | @irene5 | Mar 12, 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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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!

REPLY
1 reply
Jane S. Brown | @macjane | Mar 12, 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 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.

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ling123 | @ling123 | Mar 12, 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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@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
Jane S. Brown | @macjane | Mar 12, 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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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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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 13, 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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@macjane, please keep us posted.

REPLY
Jane S. Brown | @macjane | Mar 13, 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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My pulmonary doctor suddenly will not see me for six weeks. Very discouraging.

REPLY
Jane S. Brown | @macjane | Mar 14, 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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Like your description of feelings

REPLY
Jo Ann K | @jkiemen | Mar 14, 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

Jump to this post

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

REPLY
Jane S. Brown | @macjane | Mar 14, 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

Jump to this post

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

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 17, 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

@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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