Starting BIG 3 tonight ….

UPDATE from after 1.5 weeks on the BIG 3 .So far so good, only tired + loss of appetite and some body aches (getting use to the meds I guess?) However Tuesday I get the PICC line installed for Amakacin to be given me 3 times a week for 2 months. I am nervous for side effects and the procedure itself. Anyone else have had a PICC line? I still have to cook for my family etc. and I worry about the logistics of it all. Apparently I will do it myself after training ..... Is that common ?
Thank you for all your answers.

@lynncat I've had PICC lines for chemo. Have them insert it in your NON-dominant arm if it's healthy! Makes a world of difference in getting through treatment time. The procedure is simple, though Google would have you believe otherwise. Hopefully your doc has good reasons for IV versus inhaled. Inhaled Amikacin goes directly to the lungs where it's needed, whereas IV can possibly cause systemic side effects. But, maybe you'll continue to be lucky and not have intolerable side effects. Either way, keep fighting with a strong Can-Do attitude and those 12 weeks will be done in no time!
Terri

@lynncat I had a PICC line in the beginning and it was no problem going in and I had no problem with it or doing the treatments. I bought the shower cover in this attachment and it worked great. The same company also has arm covers in different colors and I bought those also. They worked well to cover the line.
https://mighty-well.com/collections/picc-line-shower-cover/products/picc-line-waterproof-shower-protector. I will add, however, that my PICC line was only in for about 1 week and my sensitivity testing came back and said I was not sensitive to it. So dr took me off Amakacin IV and put me on Arikayce. Hopefully your dr got sensitivity testing done and results back before you have the PICC line put in 😁

I was on IV Amikacin for Mycobacterium Abbsess. I had to be taken off because of hearing loss and a loud ringing in my ear. I was on Amikacin for 7 weeks, been off since mid-August and the ringing hasn't stop.

I started on azithromycin, ethambutol, and when added Nuzyra I couldn’t hear and had loud noises in my ears. Only started meds on Sept 18 and spread them out. I was supposed to start clofazimine and inhaled arikayce but since hearing problem I was told to stop everything. Still waiting to talk to Dr at John’s Hopkins. Not sure I can handle all 5 at once.

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.

I will be starting Clofazimine soon also. My dr has completed required forms and I signed the consent form this week. I was told the first prescription will be sent to my doctor's office and I will have to pick it up there but after that, he will have it mailed to me directly.

Paperwork can take up two moths to complete -- you would be joining a study. Was told there'd be no cost for the medication, which I might be starting soon. Best of luck to you.

@wolfplanetzero Thank you.

@mjb24 thank you