Discontinuing MAC antibiotics

Hi! I have experienced low grade fever 99-100.5 for eight straight months. It all started at beginning of year and after every test under sun I was finally diagnosed with MAC and started treatment with the Big 3 on June 27. I am on week 10 of treatment and have had 5 fever free days since starting.
For me- that’s a “Happy Dance”! I have a lot of fatigue and with fever it’s miserable- so I’m taking this as a small victory step towards clearing this monster from my life!

My husband’s pulmonologist said this cough is essential to expectorating mucous which in the long run is life saving. His cough is often exhausting. We are currently making adjustments to HVAC and even car AC vents as suggested on this site. If what I have said is inconsistent with what others have been told someone will correct me. That’s the beauty of using this exchange,

How isolated are those if you with Bronchiectasis or your spouses? Anyone go into large groups in enclosed spaces?

Hello @ totty, I thought I could still attend parties or gatherings but, in reality I can't. I was a very outgoing person and now find myself making excuses as I am not ready to share my diagnosis with friends and family only a handful. Being out with a large group is uncomfortable as I cough, fatigued, prone to headaches and have shortness of breath. I can no longer multitask ie walk and talk or I will experience a coughing attack. I hate this disease and pray the big 3 along with Ariykace starts working soon. Been on these meds since June 22... Sorry I could not be more positive...

Good morning - Moderate weather is my friend! I spend most of my time outside, either alone or with family and friends. We entertain, dine, even do fiber projects - outside.

My husband, daughter & I all have bronchiectasis; my daughter & I have asthma as well, lung health is kind of an obsession for us. When masks began to be accepted, it made us much more comfortable being in groups.

When it comes to gatherings indoors - we feel pretty comfortable in indoor "wide open spaces" like arenas, dance halls and other large, high-ceiling spaces - if the crowd is very sparse, we may even go unmasked. Lots of people = N95 mask. Concerts, plays, ballgames - we wear masks. If the space is low ceiling, crowded or noisy we go if obligatory (e.g. family funeral) - masked.
Let me give you a current example - This is State Fair time - we attend along with 1 1/2 - 2 million of our "closest friends." I work 4-5 shifts in a Q & A booth. On the bus to the Fair, and going through the entrance tents, we are masked (right down to the 2 yo.) Once wandering the outdoor spaces, the masks are off. When we go into the buildings, those of us with poor lungs mask up. When I go to work, it is in a large domed & "almost outdoor" building. We are on an elevated platform, visiting with the public, and I am okay doing it unmasked, unless someone "gets in my space", then I grab my mask and put it on.

Finally when we are about to spend indoor time with close family/friends, everyone knows that respiratory infections are risky for us. Sick people stay home. It is sad to miss their presence, but it has been a way of life for us for 40 years - since my first niece was diagnosed with severe asthma as a toddler.

People in our winter home used to make fun of us, but Covid changed all that, and most of them "get it" now.
So, our philosophy is that "caution is good, isolation is not" and we go on accordingly. How are you handling being out and about?
Sue
Sue

Brand new to Pulmonary MAC - started the three antibiotics regime in early-August. Taken off after 8 days because of very bad back and leg pain. Started feeling better immediately. Restarted same meds two weeks later - day 6 with the same results as the first try. The meds seem worse than the MAC. I cannot imagine 18 months of this!
Do they get easier to take over time? Are there alternative treatments? Am I just being a wuss? This is no quality of life ... any advice? Thank you.

First, I would like to say that you are not being a wuss. This is a hard condition and treatment to go through. Also, our bodies are different and respond differently to the medications so some people have few or no side effects and others have intolerable ones. You will find a lot of different experiences and helpful suggestions searching through this site. I know that I certainly have. It sounds like both times you attempted the medications you started them at the same time. Is that the case? It can be helpful to go on them one at a time, separated by 1-2 weeks. I started them all at once initially, and I had to stop them all when I had an intolerable side effect. Going back on them one at a time (azithromycin, then ethambutol, then rifampin) allowed us to identify that it was a specific one that was causing the problem. I could then replace that one.
Do you have a pulmonologist and/or ID doctor with experience treating MAC? That can be very helpful in working through different options and deciding what treatment plan works the best for you.

Thank you - the one at a time approach was also recommended by someone else. Why wouldn't an Infectious Disease doctor have recommended that after the first go round?! I have both a pulmonologist and an ID doctor, so obviously I am following their instructions. I will continue to explore this site - not getting much information from current medical team. I appreciate you. Thank you.

I agree. Right now I am on the Big 3 with Ariykace. I also take other meds and not once have my MDs expressed how I should take them. Does anyone have any suggestions as I am struggling with SOB, which has gotten worse, weight loss and extreme fatigue. Not sure how much longer I can continue the daily 3 as my body is showing the affects and my poor hubby is not sure if he agrees as I am seriously thinking of discontinuing my meds.. Please any advise on how I should takes the big 3 to make it easier.......

If you have done some reading here, you may have seen reference by others to how hard it can be to get good care for MAC & Bronchiectasis. I don't know about you, but I had never heard of either one before my diagnosis, even though I had been around people with lung issues my whole life. Both are considered "rare" conditions, affecting less than 1% of the population, so doctors may go through their whole career seeing very few cases. My pulmonologist had a pretty long history of treating MAC, but I learned he was NOT a team player, and was not open to questions, new or additional treatments, or cooperating with other doctors. He "fired" me when I consulted an ID doc in his clinic who had opinions different to his!

We on Mayo Connect always like to say you need to become your own best advocate to get the best possible care. If you are not getting much info from your team, you may want to ask what can feel like delicate questions:
How much experience do you personally have treating MAC?
How many cases have you treated in the past year? 5 years?
Have you had specific training/workshops in treating MAC?

Another hint would be if they have started you on a daily airway clearance routine, which is a big part of getting & staying healthy. If they don't deal frequently with MAC and Bronchiectasis, you may want to ask their help in finding someone who does.

Are you comfortable asking questions of your care team? Trust me, you are not a wuss - this is a tough treatment to get through.
Sue