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Starting BIG 3 tonight ….

Posted by lynncat @lynncat, Sep 18 5:09pm

Hello , I am starting my BIG 3 tonight .I was diagnosed with Mac Avium and have 2 cavities in upper right lung .My only symptoms have been a chronic cough since I had walking pneumonia at christmas time. Doctor thought maybe asthma or reflux and eventually after a Bronchoscopy they grew the bacteria . This was in May and I got diagnosed in June . However over the summer it has gotten worse ( I was away in Asia /Europe for 2 months) - the CT scan confirmed that .. I am a healthy 56 year old. No other issues or medications . However I am freaked out about the antibiotics Azithromyci 500mg, Ethambutol 1000mg, Rifampin 600 mg / my doctor said to take with food at dinner .

I have been reading so much about all the side effects 🙁 And how other people space out the meds. In 1 week I see a ID doctor to determine if I will add on the IV... .It is overwhelming, and I don t know what to expect.... most people get sick I think ? of the side effects?

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ps122 | @ps122 | 1 day ago

I started taking the 3rd drug - ethambutol last night so now taking all 3 M-W-F routine. Feel like I have the flu with slight headache but mostly muscle aches and lack of energy with nausea and stomach cramps. It takes me so long to recover after taking them! I am usually active, retired woman, but this is taking its toll. Hope you feel better.

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fran22 | @fran22 | 14 hours ago
In reply to @peterstl "I was also told that I needed to start taking Clofazimine. However, Clofazimine is not sold..." + (show)
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I was also told that I needed to start taking Clofazimine. However, Clofazimine is not sold in the Untied States. How will you obtain it? I am also on Nuzyra and Amikacin. I was taken off of Amikacin because of hearing issues and tinnitus. I am currently on Nuzyra, Clarithromycin and IV antibiotic Imipenem. I am interested to see how your hearing does after being off all medications.

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@peterstl
I got the clofazimine from John’s Hopkins. I did ok on azithromycin and ethambutol. Then I added Nuzyra which causes ear problems and did one dose of arikayce thru nebulizer. That started my hearing problems. I stopped everything as of last Sat. Still have tinnitus but my hearing is fine. Did go to audiologist last week and testing showed I had some hearing loss, but I think I’m fine now. Doctor told me to wait and see if I go back to normal. I have Mac and abbesses, so worried what they’ll recommend for me.

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peterstl | @peterstl | 4 hours ago
In reply to @fran22 "@peterstl I got the clofazimine from John’s Hopkins. I did ok on azithromycin and ethambutol. Then..." + (show)
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@peterstl
I got the clofazimine from John’s Hopkins. I did ok on azithromycin and ethambutol. Then I added Nuzyra which causes ear problems and did one dose of arikayce thru nebulizer. That started my hearing problems. I stopped everything as of last Sat. Still have tinnitus but my hearing is fine. Did go to audiologist last week and testing showed I had some hearing loss, but I think I’m fine now. Doctor told me to wait and see if I go back to normal. I have Mac and abbesses, so worried what they’ll recommend for me.

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@fran22 I am also on Nuzyra and this is the first time I have heard this drug could give me tinnitus. Please let me know how you do after being taken off all of your medications. I wish you the best.

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