Connect
← Return to Did your MAC symptoms improve once you started Big3?
Discussion
Did your MAC symptoms improve once you started Big3?
MAC & Bronchiectasis | Last Active: Jun 6 5:13pm | Replies (89)Comment receiving replies
Hi Barbara
I had the pseudomonas twice last year and it was successfully, treated with clarithromycin meds and colymycin inhalation. But I also had 2 Bronchiectasis flare ups April and August and needed IV Tasobactum for two weeks at home with nurse visits daily to change the pump.
I am now more vigorous with cleaning and disinfecting all my equipment, including new tubing, filters/ mouth pieces for the Pari Boy nebuliser.
Like you I am avoiding the BIG 3 as my ‘ quality of life ‘ is ok for age 77 and I can’t see the benefit of the BiG 3 at the moment versus those ghastly side effects, eating patterns, over the counter meds etc.
I am worried about getting cavities or a faster growing MAC but now just getting on with my life and family responsibilities.
I guess I will have another CT and sputum for path ( but MAC in the UK takes 15 weeks to incubate) before I see the Respiratory Doctor in February.
Let’s be positive and see if we can make it without the Big 3 or 2 for another few years..
SP
Replies to "Hi Barbara I had the pseudomonas twice last year and it was successfully, treated with clarithromycin..."
Hi Barbara and SP. I hear you re reluctance to take big 3, I was too. I also wanted to stop progression of MAC. So, I got baseline hearing test, eye exam and reg blood work. So far, 4 months in and no neg impact on hearing or sight. If you r open to considering antibiotics, those baselines can give you a greater sense
Of security.
Hi SP, interesting that you are in the UK too. I live in London. I am growing Mac and Abscessus at the moment. I was diagnosed back in Dec 2022 had 14 months of hell on the big 3 but stuck it out mainly because I knew no different! Have underlying bronchiectasis - my lungs are what I would describe a pebbledashed! I cough most days, get breathless, stay active, still work but I am very thin. I find it all so frustrating going from an energetic person to someone who is in bed by 8pm and asleep at 10pm. The fatigue is awful but I keep going. Watch and wait is the option at the moment after a year being clear I am back to square one. It is annoying that the treatment is the same as what people with TB are given - at least they recover. The wait for appointments is not good and so many have been cancelled. My kidneys were damaged from rifanpacin. Anyway I am going to battle on and keep going with airway clearance. I have to wait until July to be checked that I can tolerate a saline nebuliser! Wishing you well.
Connect
Hello to you in UK. I have a wonderful memory of being in the UK. In London way back in the mid eighties at Christmas visiting my brother who lived there for a short time. Woke up to an unexpected snowfall the morning we had to catch a flight out to the USA....It was such a surprise when we opened the door to leave the flat. W all said in surprose "It snowed." ..... and then begain our treck to the to the train, with snow under our feet, and to the airport. All worked out very nicely however.
It is time consuming and a chore trying to keep everything from invading our lungs. I am still quietly and not nervously working my way to a decision about taking or not taking the antibiotics. Yes I wonder about that also....if we don't begin the antitibiotics....the chances of getting cavities or the infection growing more or we might just be able to keep it at bay or slow it down with what we do for ourselves. From what I read nodules and cavities can develop for different reasons and yes due to infections.
It would be great if I can hold it at bay and go another two or more years without the antibiotics since I have not had a "full" blown exacerbation and feel well. It is the need to clear the throat of what comes up nearly all day, especially after I eat.
Yes the best thing for all of us....stay positive and have faith in ourselves.
Barbara