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 group.

@carla1196

Hello everyone my name is Carla. I am new to the this forum and saw that most people were told by their Dr to have baseline eye exam. I would like to know what that is exactly, baseline? Is that more that a routine eye exam?
My ID Dr. Just said to have a basic eye exam done and I did. I asked if there was anything special I need done at this exam or would a eye exam from like WalMart be ok. He just repeated saying complete eye exam.
I have no insurance and as you all know this MAC treatment can be very expensive.
Have anyone of you tried to get SSI or Disability because of this illness? Thank you for your help and guidance

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I wondered about that. The ID doctor in Tennessee insisted I go to an opthamologist and not an optometrist which is probably who they have at Walmart. Sorry about that. Because the eye exam was recommended by a doctor I paid nothing for it. Hope the same for you!

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@carla1196

Hello everyone my name is Carla. I am new to the this forum and saw that most people were told by their Dr to have baseline eye exam. I would like to know what that is exactly, baseline? Is that more that a routine eye exam?
My ID Dr. Just said to have a basic eye exam done and I did. I asked if there was anything special I need done at this exam or would a eye exam from like WalMart be ok. He just repeated saying complete eye exam.
I have no insurance and as you all know this MAC treatment can be very expensive.
Have anyone of you tried to get SSI or Disability because of this illness? Thank you for your help and guidance

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@irene5
My biggest problem is I have no health insurance. I really do not think my ID Dr really knows what the eye Dr is dining and that is why he printed the type of eye exam I need for me to figure it out? Glad to know I am on the right track now. Thank you again

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@carla1196

Hello everyone my name is Carla. I am new to the this forum and saw that most people were told by their Dr to have baseline eye exam. I would like to know what that is exactly, baseline? Is that more that a routine eye exam?
My ID Dr. Just said to have a basic eye exam done and I did. I asked if there was anything special I need done at this exam or would a eye exam from like WalMart be ok. He just repeated saying complete eye exam.
I have no insurance and as you all know this MAC treatment can be very expensive.
Have anyone of you tried to get SSI or Disability because of this illness? Thank you for your help and guidance

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@windwalker
I would like be to see a ID Dr who has had more experience for sure. My problem is that I have no health insurance and so I am lucky to have the Dr’s I have because of the no insurance.

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@carla1196

Hello everyone my name is Carla. I am new to the this forum and saw that most people were told by their Dr to have baseline eye exam. I would like to know what that is exactly, baseline? Is that more that a routine eye exam?
My ID Dr. Just said to have a basic eye exam done and I did. I asked if there was anything special I need done at this exam or would a eye exam from like WalMart be ok. He just repeated saying complete eye exam.
I have no insurance and as you all know this MAC treatment can be very expensive.
Have anyone of you tried to get SSI or Disability because of this illness? Thank you for your help and guidance

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@carla1196 fully concur with Terri…that’s two Terri’s who’d like to see you find the best care!

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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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Just came across this and wonder what the Emory doctor has suggested. 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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I was diagnosed with mac bronchiectasis nine years ago when I was seventy-three. I chose not to go on the antibiotics. I had five very good years before really feeling the effects of the disease. Only one of the antibiotics, azithromiazine , responded to testing. I was on it for five months and did feel better, gained a little weight and had better energy. However, I was losing hearing in my left ear. My pulmonary doctor took me off it immediately as she judged it was a side effect of the antibiotic. I think I made a good choice for my life. I know that some folks on this site encourage hanging in and going through the side effects but for some they are quite damaging. It's an individual choice. Good luck Flib

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

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