Have you had a wedge resection?

@laveita I am interested in that also as it was discussed for me.

@laveita Hi Bell, clofazimine was really hard on my stomach (sharp, stabbing pains), so I have only been taking a half dose throughout most of my treatment. My pulm was okay with this since I’m taking it daily and am on a full dose of the others, plus Arikayce. I haven’t noticed any skin changes on the half dose over the past year, but I know it is a fairly common side effect. Have you heard about the clinical trials for inhaled clofazimine? I don’t think skin changes are a concern with the inhaled version. They had one available in my area but I was unfortunately ineligible since I am taking Arikayce. Might be worth looking into.

@knully I am currently on ethambutol and azithromicin plus inhaled 7%NaCl along with using a percussion vest. Did inhaled Amikacin for a year (had to stop in December). It really did a number on my voice but luckily that has resolved itself. I have changed doctors and am very impressed with the UNC Bronchiectasis and NTM Center, my new pulmonologist and the entire staff. She is the one who has offered the study using clofazamine. I feel like I should take advantage of the opportunity. I’m very blessed that I feel good, I have lots of energy and have not had many symptoms or setbacks. I’m driven to be open to any new treatment though as my scans do not indicate that the current meds are particularly effective. This is such a frustrating disease.

I’ve been on clofazimine for 3 months now. Bothered my stomach for the first month or so but that has settled down. I was worried about the skin discolouration as well. But haven’t had any issues at all. Doc said because I’m pretty pale I would just look like I’d gotten a bit of sun. So far nothing at all.
If you look at pics on line it looks horrific. But that’s mostly people who took much larger doses for leprosy. I only take 2 pills a day so not a huge dose.
I’m waiting for a sputum test in April to see if making any progress. As this is my third bout of MAC and the big 3 was not making any difference in results in 10 months of treatment.
Also just got put on a puffer from pulmonologist. Seems to help with coughing up mucous.

Hello, I’ve been taking Clofazimine since 10/24 no side effects.
My ID Dr was an investigator in the inhaled Clofazimine trials . They have been discontinued

For anyone who wants to read about the discontinued inhaled Clofazimine trial:
https://www.healio.com/news/pulmonology/20251114/nebulized-clofazimine-trial-in-nontuberculous-mycobacterial-lung-disease-discontinued

@softballqueen, I was diagnosed with thymoma as well as bronchiectasis (no MAC) back in 2023. Since my thoracic surgeon had to remove the thymoma, he suggested to remove my worst bronchiectasis area via a wedge resection of my right middle lobe together with the thymoma surgery. This was a robotic assisted surgery done in July 2023 at Stanford.
My healing time was about one month and I stayed in the hospital for two nights. No complications. The outcome regarding the wedge resection was that I have less mucus, cough, and exacerbation. I still have to continue airway clearance twice a day but that's just part of bronchiectasis (my other 4 lobes) treatment.
Since my surgery involved thymic gland so it's different than just wedge resection. It's best to ask your thoracic surgeon regarding wedge resection surgery risks.

@jannyyoung Thank you.

@jannyyoung ,I had a robotic wedge lung Resection for my NTM cavitary 3 cm lesion. I was completely asymptomatic, and the mass was seen on an incidental finding of a chest x-ray. The surgery went great. I’m two weeks out and walking 5000 steps a day. My oxygen rate is 98%. I have nothing to do but follow up with the CT in three months. My cavitary mass was completely encapsulated. I could not do the antibiotics for even two weeks and so I am extremely happy that Dr. Robert to folio from NYU agreed to do this surgery.

Read my reply below … Robotic wedge resection lung surgery is the best thing I ever did for my NTM . My surgeon was excellent and it’s probably best to find the one that is very experienced in this procedure. My recovery has been great. I’m walking 5 to 6000 steps a day. My oxygen rate is 98%. I do have pain but that will get better as time goes on..