Connect
Newbie here. Scared and overwhelmed by MAC treatment plan
I will soon be doing 12 weeks of IV Amikacin plus big 3 for a year to 18mo. How do you muster the mental strength to battle all of the side effects? What is the reality of what you can physically do day to day. Will I be incapacitated by the fatigue and side effects? How much of my day to day life will be compromised? Please share your experience especially what a “good day” looks like and how often those happen. I have visions of being bedridden with nausea and fatigue.
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
Hi. Thank you for the positive post! Would you mind sharing your Rx schedule? I am about to start the three antibiotics and hoping to find the best timing to alleviate side effects. Thanks again!! Kris
-
Like -
Helpful -
Hug
2 ReactionsHi Kris,
I'm so sorry that you need to be here. Most importantly since we're "stuck taking Big 3 for at least 18-24 months" I have chosen to ensure the maximum effectiveness and absorption of each daily dose. No cheating allowed. Breakfast 8:30, Zithromax at 11, Lunch at 1, plain Kefir alone at 2:30, Dinner at 4:30, inhaled Arikayce at 5:30, Ethambutol and Rifampin at 8.
*I will say Lunch is always my largest meal of the day, and I much prefer the outstanding health benefits of plain Kefir over yogurts.* Seldom eat out (we enjoy entertaining), follow a very clean diet, zero alcohol, and moderate-high intensity exercise daily is paramount for healthy mind, body, and soul-and now airway clearance!
I'm well aware that my lifestyle choices work for very, very few Americans, but that's not my concern. I'm also blessed my ID doc got me on Arikayce after just 4 months on the Big 3-yes, blessed.
I'll repeat what others say: Attitude is 99% of the game of life!
Let me know if you want/need anything at all.
Terri
-
Like -
Helpful -
Hug
4 ReactionsThank you! Sounds like you didn’t have to do the IV. Thats great! Please tell me more about how you figured out your schedule and the amount of exercise you do. Do you have any side effects?
Thank you! This is very helpful. I am trying to get my schedule figured out before I start. I don’t have a prescription for Arkiayce yet and not sure when/why/what it is used for. I appreciate all of your help. 💕
One more question if I may. I am prescribed Azithromycin and I see you are taking Zithromax. Is one preferred over the other?
No IV as my ID doc at UMN in collaboration with his partners at Mayo-Rochester are firm believers at sending antibiotics straight to the source. Hence inhaled Arikayce directly to the lungs.
I run anywhere from 6-8 miles/day with Sundays off. But my (also runner)husband and I walk 10 miles on Sundays to rest our joints.
Please scroll up for other ideas from myself and others on scheduling. We are all individually combating this to what fits our indivual lifestyles and choices.
Terri
-
Like -
Helpful -
Hug
1 ReactionSame med. I'm a retired organic chemist and microbiology, so I worked directly with the drug companies. In this case, Pfizer.
Terri,
You are a wealth of information and I appreciate your knowledge and s upport. I am a big fan of Kefir as well. Are you taking any probiotics and if so would you mind sharing which ones?
Your level of fitness is unbelievable! Wow!!!
Terri- I have read your responses here. It sounds like you have followed a healthy diet for some time before your diagnosis of BE/MAC. It sounds like you have been physically active for some time before your diagnosis with BE/MAC. Therefore it appears you have a healthy immune system. I believe, I wonder, if those who have a heathy immune system possibly have an easier time with the antibiotics. Considering your career and having been involved with drugs/health matters, what do you think?
I also have come to prefer my main meal at noon and then have soup/salad as the last meal. I also I have come to prefer the Kefir instead of yogurt and now make my smoothie with it and as well as use it in my overnight oats.
Also I rarely eat out now that I have BE and am living with the MAI infection. I choose not to go on the antibiotics. I had and continue, to date, to have a low count of MAI and am waiting for my last sputum submission results. So far for the last 8 + years I have not had an exacerbation and continue to feel well.
My continual need to clear what was coming up to my throat sent me looking for answers from doctors and it took my loss of 35 lbs. for my PCP to finally say....we need to do a C Scan.
Had you had an exacerbation or weight loss prior to diagnosis?
Considering your life style I will be interested to know how you do along the way in the next year and years with having started the med's and nebulizing etc. etc.
If you have time to respond. Thanks.
Barbara