Big 3 Impact on Daily Energy Levels

Hi, I was diagnosed a year and 5 months ago. I am told my BE is mild as well. I have very few symptoms and am non-productive. I have been on the "Big 3" for a year and most recent test still shows MAC. My career is very demanding. I feel fortunate that I have not had any negative reactions other than microbiome and I have been taking high quality pre/probiotics. I am 59, I eat extremely healthy/clean. Other than I enjoy a glass of wine. I am considering taking that to no more than a glass Sat / Sun... Everyone is different. I don't take any other medications. I do supplement. I am generally opposed to medicine but chose to go this route for my family. I am being prescribed Arikayce, just waiting on the approval. A little nervous about known side effects but trying to stay positive. Best of luck and this group has been a great resource and comfort as I have felt so alone. That has been the worst part for me.

Hi Malambrit,
I've been on these meds for almost a year. Mostly, I have felt fatigued. It's good to stay hydrated and rest when you can.

Thank you. I appreciate you sharing this information. I am based in Singapore and this online community is a great resource. I wish you the best of luck with Arikayce and that you continue to tolerate it well.

@amt005 Hello, and welcome to our supportive community. Based on your description of your current medical condition, you appear to meet the treatment protocols for watchful waiting instead of starting the antibiotics.
Have you doctors mentioned airway clearance as one component of treating your NTM?

Here are the current guidelines for treating NTM infections. Pages nine and eleven may be especially helpful in deciding what your next steps might be. Page 24 talks about other ways of staying healthy.

The other thing to consider, based on treatment guidelines, is that your doctor may not be experienced in treating NTM, because they are discussing daily treatment, which is usually reserved for severe symptoms or failure to convert within 6 months. Is it possible to find a Bronchiectasis or NTM specialist in Singapore?

I was put on the big 3 when I was first diagnosed, 3 years ago. Sadly I could not tolerate the medication at all.After 7 days I was switched to 14 days of Levofloxacin 750mg 2x daily. Then Tobramycin , 28 days on, 28 days off for 3 cycles. This treatment cycle worked better for me with tolerable side effects.

Thank you. The past 6 months were watch and see but I don’t believe she liked the changes in the high res CT. Although she has not been particularly clear on this (changes) nor has my doctor outlined a way forward but she did say at one point the medication would be daily. I am seeking access to a doctor in my home country (Australia) and will likely need to manage a collaboration of AU/ SG doctors if the remaining tests are conclusive. Coincidentally (?) my elderly mother was diagnosed during Covid and commenced treatment last year.

Does shehave you doing daily airway clearance with 7% saline during the waiting period? This I considered standard bronchiectasis treatment with or without antibiotics, and can actually suppress NTM growth.

No she doesn’t. I would like to know more. Please can I trouble you to share the link (referred to in your first reply) because it didn’t come through / isn’t visible to me.

Thanks

While there are 3 standard medications, I would know which is being considered standard. I know that sounds odd but my mom ( I was her caretaker for 5 years) had tried more than just 3. So which 3 are they going to try you on? Azithromycin and Ethambutol didn't cause issues with my mom. Rifampin made her severely nauseous and she couldn't keep food down at all. Also, Rifampin and Rifabutin will cause your urine, stools ,etc to be red(dish) so do not be alarmed. Arikayce nebulizer treatments almost killed my mom as they caused fluid in her lungs and she felt like she was drowning after each use ( I have already many that it's helped though). The Amacaycin shots made her very sick and they hurt her but they helped her after a bit.

Try this link: https://bit.ly/3IsVYws