Hello! Yes, the timeframe on the 3 antibiotics is overwhelming for many patients. Treatment recommendations are usually based on cat scans, sputum cultures and symptoms . I assume that you are under the care of an experienced Pulmonogist?

Yes, her specialist is good and today recommended the course of medicine should be from one year to a year and a half, with monitoring and a CT scan after the first 3 months, and my wife will soon front up to a hearing test, followed by an eye test and an ECG, all of which seem to be required before starting the antibiotics. I presume this arrangement is the same in other countries. Thanks very much for your interest and reply and by way of support I have assured my wife that she will not be the first to take the medicine in Australia for NTM.

You are most welcome! Yes, it can be a long journey especially when you have never heard of this diagnosis before nor know anyone who has been down this road before.

We are here to support the both if you in the months ahead. You can post questions 7 days a week. We also have a phone hotline if you are interested in speaking with someone.

Welcome to the site aussie! I agree with Katie. The treatment duration is often daunting for many with NTM lung disease. The trouble with NTM is it is slow growing and hard to kill. The treatment time and the number of medications recommended to treat it reflect that. Most doctors will check sputum cultures throughout the course of treatment to make sure that the medications are effective towards the NTM. I can understand your wife's concern with side effects though. My best advice is if she decides to start the medication regimen, that she keeps the "lines of communication" open with her specialist, and is never afraid to reach out with questions. Our community is here to support you both as you navigate your next steps.

Thank you for this good advice. The TB nurse at the local hospital is setting up the appointments for the three tests I mentioned

My wife has undergone the required tests prior to commencing the Big 3 meds and has completed day one, taking two tabs 45 mins before breakfast and three much later on in the morning. She eats probiotic yoghurt later on in the afternoon to assist her gut health. No side effects yet, other than discoloured urine and this is harmless, and of course there may be none, but she was a little sleepy this arvo (afternoon in Aussie speak) and had a nap on the sofa.

Hello! Your wife maybe tired from the mycobacterium, the medications and or the combination of both. Naps are necessary for many throughout the journey. One day at a time.

Thank you for the above replies. My wife has started a journal to jot down how she feels and to note any reaction to the meds. Reddish urine is the only one so far, but we are only at day 3.

Aussie,

You are most welcome! Orange/ red urine is typical due to Rifampin.

Keeping a medical journal is very important to keep track of any changes, symptoms, questions for her doctor.

I also kept a journal to express my feelings while on the NTM journey.
We are here for you.