How to live after you stop. Meds

I understand your anxiety. I was on the big 3 and arikayce for total of 4 years. Stopped in Oct. I felt naked with no protection. The anxiety fades. And my CT this year showed nothing new and clear. They will monitor me and watch for any symptoms that it’s back. I do daily nebulizer with saline and wear my Afflo vest. Kept taking probiotics and added turmeric as an anti-inflammatory. So far so good. Keep us posted on how you do.

Congratulations. That was a long haul.
Glad to hear how you are doing and that you added turmeric for inflammation. In todays world we almost all need probiotics.
Barbara

@lilianna I was wondering why you stopped 18mths after converting? Is it meant to be 12 mths?

I’m on Azithromycin, Ethmabutol, Clofazamine and inhaled Arikayce (Arikayce mid Dec). Started oral treatment 8mths ago (staggered treatment, started on only 2, then added Rifamipicin in November and switched it to Clof not long ago). I was told that if you don’t convert within 6mths, you’re not likely to convert at all/ be cured. So I’ve been so anxious that I’ll never be rid of this Mac. @ncalvan, just wondering how long it took you to convert? This may give me hope

I didn’t convert after one year on big 3 oral antibiotics. I added arikayce and converted sometime in the next year.( I need a Broncoscopy to check because I don’t produce sputum so that’s done once a yr). Then I stayed on arikayce and orals for 18 months after conversion per protocol and Mayo consult and I have remained negative. Hang in there. Give yourself more time with the meds

My id doctor thought i had rough beginning and additionally ethambutol was added in January after my NJH visit so they counted it since January.

Hi Tammy,
I am with you. The meds you have been on is what I am on. I have done 3xs a week for three months on arakayce by infusions. It was a rough road but I did it.

I have been on the other meds you mentioned since October. After my three sptum are done ( I don't have any flem to give). I have 12 to 15 months more to go on meds.

How did your body do all those months on these drugs? Did you still feel tired, and aches on the rest of the months that you took your meds?
It is a real is alot to go through on your body I hear you.

Im no doctor but I have been removed from these hard drugs before. If those medications are removed slowly I think it will take time for our body's to recover from being on all these meds and having MAC but hopefully, we will feel better in time. Some doctors ask me where did you get MAC from? If I new I would tell you.
Do you know how you caught MAC?

As far as the MAC coming back we can get it back, but that's the reason we're on meds so long. Hopefully, we won't have any long term affects? Or get it again. Scary stuff.

Hi Ncalvan,
That's great news. I have been on 3 drugs plus infusions. I'm glad the anxiety fades cause I couldn't go through this again.

Do you feel any lasting affects or anything?

No difference. Less fatigue when I stopped the meds but I was able to manage my minor side effects well. So fingers crossed symptoms don’t come back for awhile

I am scheduled to stop meds next month and I am so exited! How many times a day do you nebulize?