36 years old and starting the big 3
Hello! I live in Europe and am reading this forum for a while. I was diagnosed with idiopatic bronchiectasis after massive hemoptysis 3 years ago (no hospital history before). I got a bronchial artery embolization and was symptom free till last year when I developed a daily productive cough (luckely no blood).
I had several antibiotics for 'normal' bacteria but last months MAC was cultured twice. I only have a productive cough, no other symtoms. Because of my age (I am 36 years old) I have to start the big 3 today (daily dosage). I am a bit reluctant to start as I honestly feel good – I work fulltime and have 3 young children and a busy social life. I am wondering if there are more relatively young people here who started this medicines? Thanks!
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Hi @nes36, I consider myself relatively young to have been diagnosed with MAC at 48, compared to the average age of 68 at the diagnosis. I am still 48 and will be for a little while longer. The pneumonologist I am seeing said she believed it was an old infection since it was mildly to moderately progressed but with no obvious symptoms at the moment (I had a bad cough 10-13 years ago when I was still a smoker, but I have no cough now). She said, I could have had it for 10 years and not know about it. Indeed, at diagnosis I had absolutely no symptoms and "felt fine." Yet, 3 months into taking the Big 3 and nebulizing I can see a huge difference in how I feel. Compared to how I felt before, I feel fantastic right now. I realize that, although I had no symptoms and felt fine, I used to be really fatigued. I used to get lightheaded sometimes when lifting 20lbs of weight. Today I lifted my PR! So, I would not ignore this illness just because I was feeling fine. Those bugs may have a rave party in your lungs for years with you feeling fine. And then, one day, I ended up in a hospital because I fainted out of nowhere. Stay strong and positive! All the best!
If your CT scan looks okay and your bronchiectasis is stable and you feel good, I would definately watch and wait before going on the Big 3. Plenty of people can manage MAC (or even get rid of it) by doing airway clearance. If you take the Big 3 now there is not guarantee you won't get it back sometime down the road. Airway clearance is super important, Aerobika, 7% Hypertonic Saline, Vest and the Autogenic Squeeze. Stay strong and work hard at Airway Clearance!
Thanks @mimifeels! Glad to hear you even feel better! I am worries that the meds will make me feel worse, but your experience sounds great 🙂 I find it hard that this is – like many other diseases – an invisible disease, difficult to accept!
@pop55 Thanks! Will ask my pulmonologist about airway clearance, he didn't mention that yet (I did teach myself some 'huffing' to get the mucus out). The decision to treat or not to treat seems very grey… My bronchiectasis progressed from only the lingula to my right middle and upper lobe including small nodules… I guess that is why he decided to start the treatment…
Apart from the orange urine and the mental 'acceptance' thing I am doing fine so far 😉
It sounds reasonable to start medication, although airway clearance will help get the sputum out and hopefully reduce other infections
If you can start one new medication each week rather than all together, it will be easier to know which is causing problems if side effects arise
You can expect more fatigue and GI side effects in the first six weeks or so, but your body will adjust over time.
Learn all you can before you start treatment. Its important to work with a DR who treats NTM/MAC because not all treatment is the same. There are great YouTube videos on the subject. Watch to Treat or Not to Treat by Dr Huitt From National Jewish. https://www.youtube.com/watch?v=Dw8hVJp1sJU. Dr Dailey also has a number of great videos on YouTube.
Dear nes36, my heart goes out to you.
It’s of the essence to do airway clearance the right way. You may need to use different devices, inhaled meds and saline to aid in coughing/huffing up sputum. It is not enough to take the big 3.
I highly recommend finding an NTM center in your country even if you have to travel to it. You need to have a team of specialists to help diagnose and mitigate or treat underlining conditions in addition to determining the appropriate course of airway clearance for you. We are all different, but all need NTM respiratory therapists to assist us and advice of frequency given the severity of the infection and our specific underlining conditions. Watching a video on YouTube is not enough.
Best of luck.