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!!

I just started the Mac treatment. Do not know what to expect.

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@derbeltal

I just started the Mac treatment. Do not know what to expect.

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@derbeltal Hi, it's very hard to say – every individual responds differently. Some cannot tolerate the meds, some have few side effects, others figure out how to manage. Here is a little about my journey:
I was diagnosed with bronchiectasis and pseudomonas after being quite ill for over a year with a horrendous cough, weight loss, fatigue, intractable asthma and intermittent fever. While being treated for pseudomonas, the MAC cultures came back positive. Clearing the pseudo took 4 courses of antibiotics including tobramycin. Then in July 2018 I started the Big 3, 3 times a week. My cough cleared, and the asthma symptoms eased, but I battled fatigue, gastro symptoms and weight loss. Fast forward to today…I am on the Big 3 daily because the infection still shows in my cultures and CT scans showed increased size of spots in my lungs. I have stabilized my weight (much lower than I would like) by forcing frequent, small, high-calorie meals (no appetite.) The fatigue is always with me – some days worse than others but manageable. By taking my meds at bedtime and drinking ginger tea/real ginger beer often I am able to manage the nausea & other gastro issues. I am awaiting the latest sputum test results and the next CT to see if we can drop back to 3X/week. I manage the breathing/lung clearance with alternate nebs of 7% saline and levalbuterol – one of each per day when sputum is abundant, on alternate days when not, as well as my Aerobika breathing device. I am paranoid about the hearing and vision threat by the meds, so see the opthalmologist and audiologist every 3 months – so far, so good. Also my ID doc does my bloodwork every 3 months to check blood counts and liver/kidney function. I am tolerating this regimen because I know how ill I was before starting the meds, and know I could not live that way for long – and I have a lot left to live for.
Good luck to you!

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Thank you so much as I have no idea what expect.

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