Starting BIG 3 tonight ….

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.

@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.

@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.

@ps122
How are you doing on the medications? I’m 76 and dealing with ntm and abscesses, stopped all drugs due to problems with hearing. Don’t know my new plan yet.
Fran

@fran22 it’s been difficult. A lot of nausea and stomach aches - cramps, and very tired little energy. This week will be my first full week with taking all three, and hope my system gets used to it. I had a couple of episodes now where I’m get depressed and start crying for no particular reason. Don’t know if this is anxiety about this or not. Hope it goes better for you.

@ps122
I can relate to the crying, when I was told I’d be on 5 antibiotics I was a mess. Still off of them, will be going back on something soon. I hope your health improves.

I'm sorry it's been so difficult and hope your body adjusts soon, as some people seem to. It's not surprising that get teary-you're dealing with a lot.

I have read in some posts that some people use antidepressants to help them get thru it. Just sharing as a thought. Maybe others will chime in with how they dealt with the emotional aspect.

@peterstl
I can relate with your feelings and dealing with the stomach and nausea feelings. I was admitted to the hospital for 7 days on August 20th, and started with 2 IVs (Amikacin 1,500 mg 3 times a week, & Imipenem 1,000 mg 2 times a day) and 1 oral Linezolid 600 mg 1 time a day. Luckily I didn’t have any nausea during my hospital visit. I did need the picc line inserted before discharge to home for continuing IVs of Amikacin [2 hours of IV) 3 times a week and Imipenem 1,000 mg every 12 hours AM a& PM (1 hour for each IV) and 1 oral Linezolid. My ID doctor completed paperwork for prior authorization for Nazyra to replace Amikacin IV, and it was finally approved on September 3rd so one less IV. Then recently he submitted paperwork for approval of Arikaye to be inhaled by nebulizer which will replace Imipenem IV, and I start Arikayce this coming Monday. So thankful for his work so I can eliminate the IVs. The Imipenem IV was making me nauseous every time AM & PM and then lasted for a couple hours. My normal feeling time during the day was shrinking and didn’t have an appetite most of the day. I stopped the Imipenem IV this week since the approval of Arikayce and I feel like a new person, it’s a wonderful feeling! I would suggest that you keep communicating with your ID doctor on mychart and ask for replacement drugs for your IV meds. I am scheduled to have my picc line removed tomorrow and looking forward to that freedom too. I ask my doctor for a script of Zofran while dealing with Imipenem and Nazyra together, I have been cutting it in half.
I tried to do some “normal things” like seeing friends and shopping when the nausea feeling wasn’t constant, usually mid day worked for me. My husband was dedicated prepping the IVs because the Imipenem needed mixed before the infusion and he put the IV pole on a card table to decrease the infusion time. I admit that it is a big life changer for me and my husband. I am so happy that my ID doctor has transitioned me from the IVs. It has improved my well-being tremendously! Take a step at a time.

I was diagnosed with MAC in 2021. I had to take all the antibiotics, you will be taking, for 9 months. One if the antibiotics has possible side affects but I can’t remember which one. It can cause heart problems, color vision loss and kidney problems. I had to have my blood drawn every month as well as my vision tested and a EKG. It was so daunting and I was really mad about it all. The MAC is gone now but I’ve been diagnosed with ABPA. The crazy thing with all of this is, I’ve never smoked, I don’t have COPD or asthma.

@susanrg20 Thank you for sharing your experiences. I see you're new to the group and just want to welcome you. It's a helpful and supportive group. I'm really sorry you have to deal with ABPA, after dealing with MAC. I have just bronchiectasis- also never smoked.