Deciding to discontinue meds

I had to stop MAC tx after 7 weeks because of severe stomach and abdominal pain a year ago.
CT every 6 months + vest, nebulizer 2x a day and my husband does chest PT every morning.
Wait and see approach. Both my pulmonologist and ID felt I should have quality of life.
Scary, always afraid of pneumonia etc.
We have to live our lives best we can
Good luck
Marie

Thank you. Quality of life is key. Sorry to hear you had to go off the meds due to the side effects but sounds like your airway clearance routine is beneficial.

In addition to quality of life being key, it is important to remember that there are more ways to "treat" MAC/NTM than antibiotics.

"Watch and wait" is a very valid treatment plan IF you include daily/twice daily airway clearance like you are planning.

Like @mariegrace I stopped antibiotics over 5 years ago while still having positive cultures. So far, so good - only a few exacerbations, stable CT, good lung function.

Good luck with your watchful plan - stay vigilant.

Thank you for the feedback Sue. Not a trade off per se, but doing 2x daily airway clearance is so much more manageable than the big 3. I think my primary concern is antibiotic resistance should there be a recurrence so hopefully I can keep it at bay.

Thank you!

What do CT and PT stand for? What is a vest? I tried the three antibiotics and had serious side effects and stopped. My Dr wants me to start again changing the dosage and having me stop rosuvastatin for cholesterol which he says the combination is making me nauseous and loss of appetite. Thank you.

The new ID doctor that I saw last week, also because my doctor closed his practice, said that since I don't have serious symptoms and the medications are making me feel much much worse than the disease it would be best to try watchful waiting. She is ordering me a vest in hopes that it helps me with airway clearance along with using other techniques like controlled breathing, nebulized saline and Aerobika. I'm feeling fine and hopefully can manage the airway clearance successfully so I can avoid the medications which have already caused some serious damage from my first round of treatment which lasted 16 months. I am one of the 50% that have had a reoccurance.

CT chest tomargraphy and chest PT physical therapy..
The vest is an occilating device that loosens mucous.

Thank you!!

Sounds like we migrated to the same Dr and we are on a very similar path! Glad that she ordered you a vest and hope you find it helpful. If the vest is too intense at first, you can order a wrap to use instead. I think it helps to ease your way into it, along with lower settings until you get used to the feeling. The rep told me, in the nicest way, that I was very “sensitive” however they are very helpful and want you to be successful. I am still waiting for insurance approval so hopefully it won’t be an issue. Hope you are feeling better by being off the meds.