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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
Hi @bnthorson. The side effects are so variable with many of these drugs, it seems. The Clofazimine hasn't made a big difference to my digestion really, but it has affected my bowel a bit. The Azithromycin seems to have affected my digestion more, and it gives me more bloating / swollen belly.
The Clofazimine tooth staining is much more than I had with Rifampin. It only really happened after a year on the drug -- but it may not happen at all for you.
How long did you go before the MAC came back? (Oh this disease and the drugs we have to take! I wish I could fix it for all of us)
Replies to "Hi @bnthorson. The side effects are so variable with many of these drugs, it seems. The..."
Hi @goatlady -- you said your pulmonary doctor stopped Arikayce for you due to hearing problem side effects, I'm very sorry about that,
I had a full hearing test again today, and unfortunately my hearing has deteriorated since I started Arikayce. I thought so -- the tinnitus has increased, But I feel like I'm sort of '"trading off" a bit of my hearing in the hope that Arikayce will help kill this bug,
The Arikayce does feel like it is doing something -- my lungs sure feel worse! I hope it knocks out this bug.
I see my pulm doctor in 3 weeks -- don't know where we'll go from here.
Irene @irene5 I hope the Arikayce is still going okay for you.
And thanks Heather @heathert for being there for me!
Hugs to all of you, from Annie
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My first positive biopsy was 2002, I was a symptomatic. Got sick in 2005, medicated 2 years. 5years later , 2012, again symptomatic and medicated for 18 months. Had pneumonia and other infections in between. Had positive sputum Jan 2019, but minimal symptoms. July 2020 symptoms returned along with another strain of MAC, MRSA, and aspergillus. So that was 6 years. During those breaks I felt very good! Started MAC meds in August 2020. I am not feeling as well as I did the last two times at all, but I am that much older too. My breathing, fatigue, lethargy and significant weight loss are new to me. Due to have a bronchoscopy in the fall.
Thank You for all the info in your experience and knowledge, it is very helpful. I had no support my first two rounds.
Take care