Is there any successful story?

You are such a wonderful new addition to our group - which I always say is "full of wonderful people who would rather not be here."

When you say, "I am not aware of any study tracking reinfection rates beyond a few years (which I do think is problematic given the high reinfection rates over time)"...I hear you...In the ideal world, researchers and doctors would have all the time and money they need to devote to studying illness and disease, but we all know that doesn't happen. The real problem with the research and study of rare diseases is that dollars are scarce. Compared to Asthma & COPD, Bronchiectasis is a rare disease, and NTM/MAC is far more rare, even though it may not seem like it to us. A choice must be made in most cases between developing new knowledge and treatments and following known patients over time (in our very mobile society.)

And this analysis is right on point: "This group is likely somewhat of a biased patient population. We may be more symptomatic, more frequently dealing with infections and other challenges, more vigilant, more data and research oriented, more anxious and need of support, or just overall more curious than the average patient." In fact, if I had not become a mentor on Connect and in this group, after I lived with my infections and Bronchiectasis, I might well be one of those who only checked in occasionally.

So you will see me say, day after day, in many of our discussions, that every person has a different experience with MAC & Bronchiectasis, different underlying conditions, and a different tolerance for risk in their lives.

Frequently I remind people in other groups, like Joint Replacement or Osteoporosis of the same thing - only (some of) those with problems come looking here for solutions. Even fewer actually post here - maybe one out of 10 members who are reading our discussion actually comment.

I try to remember to respect that aspect in our members, and try to never say "you must", or "never" or "always" and rarely say "you should"...

All that said, I feel like a success story, MAC & Pseudomonas free for over 5 years, with stable Bronchiectasis, and finally controlled Asthma - but knowing that can change at any time. I am forever grateful for all I have learned here, and for all those who have supported me, not just in this group, but the several others where I spend time.

My Dad was always fond of saying "There but for the grace of God go I" and never passed on the opportunity to help, support or cheer up someone else - family, friend or stranger - it is what the other volunteer Mentors and I try to do here each day.

I added clofazimine about a year after not clearing on azithromycin, ethambutol and rifampin daily. Previously, I was on the 3 antibiotics on the 3x/week schedule for 6 months, and didn't clear. My doctor did not wish to drop any medication (I was on 5 antibiotics for a while) since I clearly had resistant disease and my drug sensitivity tests were still showing activity against MAC for all the drugs. The pill form of clofazimine is available as a compassionate use drug, and I understand there currently are research trials using an inhaled formulation. My ID doctor has had good tx success in adding clofazimine, which is a very low side effect med (I had none, other than a slight "suntanned" appearance) at the dose for MAC, but after 6 months, I was still MAC positive. We then added Arikayce (while maintaining the other 4 antibiotics) which, so far, appears to be successful in getting clear cultures. By the way, the active drug in Arikayce IS amikacin, but the inhaled liposomal formulation has fewer side effects and less toxicity than IV amikacin. After starting Arikayce, my doctor did a peak amikacin blood level and it was well below the level where there would be concerns about toxicity. This is one of the advantages of Arikayce: lower systemic absorption than amikacin because the liposomes attach directly to the lungs. Also, the dose can be adjusted: daily, or 3x/week, or even, according to the specialty pharmacy pharmacists, (always available for patient consults), reducing the dose for each tx from the usual 14-20 minute tx to a shorter time frame.

@carolj68 thank you for your feedback. To clarify, you took the pill form of clofazimine, correct? Was that under a compassionate use exception because you did not clear MAC after a course on the Big 3? I didn’t realize clofazimine was restricted in its use. Lastly, do/did you have cavitary disease? Given your drug journey it sounds like you may. If so, bigger or smaller than 2cm (if you don’t mind sharing that level of detail).

Thank you - I think TB history when younger is also part of reason of MAC later in life. Unfortunately many MAC patients have family member with lung disease, so I think it is genetic make up. Life style and diet is really important, like you said, those are excellent points! Exercise should be tailor made for everyone too. Mild to moderate may be the best fit for MAC patients. High stress exercise may harm the immune system. Everyone is unique and we have to learn from everyone but find the best way for our unique condition. Wish you the best luck too!

I took 200mg daily clofazimine, with 250mg azithromycin, 1000 mg ethambutol daily. I am also using amikacin inhaled three times a week. I will finish six months soon and so far so good. I am in my 40s so it helps a lot.

I agree with carolj68 that Clofazimine has less side effects. I became a little bit darker after taking this medicine for 1 month and my skin became dryer and a little easier to be cut so far. It is better to take this medicine with food.

@helen1000 did you start with clofazimine/azithromycin/ethambutol daily, or did you start with rifampin/azithromycin/ethambutol daily, and at some point swap out the rifampin with clofazimine? Also, did you start with both the oral antibiotics and inhaled amikacin, or was the amikacin added at some later time?

@carolj68 I am curious about your drug regimen: rifampin, ethambutol, clofazimine and azithromycin daily. I have been reading about clofazimine as a potential replacement for amikacin but in your case it seemed you needed the amikacin to convert. Can you speak to your use of clofazimine? Was it included with the initial Big 3 treatment in hopes of converting without Amikacin? I read a study just last night that replaced rifampin with clofazimine in harder to treat patients (cavitary, advanced disease) but your doctor seemed to add it to the Big 3, like they do with Amikacin. I am just learning about clofazimine and trying to get a better understanding of its use with MAC. I have cavitary disease and I understand that while some ID doctors are starting to drop rifampin (and there is study done but I don’t think results out yet on just two drugs for non-cavitary disease) with cavity disease a third drug is still felt necessary, raising the obvious next question of options for this third drug. Amikacin seems an obvious choice but its known toxity levels seem to preclude long term use for many. I recently read that there is a clinical trial underway studying clofazimine for treating MAC but I don’t have any details in terms of the when/how of its tested use. My understanding is that it’s being looked at as a less toxic alternative to amikacin. I think we could all get behind a less toxic option to amikacin.

Anyone that has experience with clofazimine I would be interested in hearing about it. How was it part of your drug protocol and what was your experience.

Thanks!

I have cavitary MAC , diagnosed in 12/22 . Started Arikayce March 2024 and Clofazimine October 2024 . Also currently taking Azithromycin and Ethambutol. When I was first diagnosed started with Imipenum and Amikacin, then Omadacycline and Linezolid