Hi Terri - sorry it has taken a long time to reply.

Yes many of the meds used for NTMs can potentially cause heart side effects that usually get better after the drug has been ceased and leaves your system. BUT for people who are afraid of the meds - please understand that this is a RARE side effect. You are NOT likely to get it. Just have an ECG (EKG) from time to time to check on it.

When it does occur it is usually not too severe for people. For example, it usually only causes elongations of the QT wave up to 30 milliseconds of delay (up to around 470 or 475 ms).

It really only becomes a serious risk when it reaches 500 milliseconds of delay or longer -- which is what happened to me. But I also developed hypokalemia (very low potassium). That's also a rare side effect -- the NTM meds can do this by causing people to urinate out more potassium than normal.

I've been on these awful, stupid meds for 2.5 years now but just received new results -- unfortunately I still have the MAI.

At the start, I was a bit of an optimist and thought for sure I'd be in the 70% to 80% of people who seroconvert and get rid of MAC/MAI....but, as it turns out, I'm in the small treatment failure group instead.

I will be put on Aricayce when it and the special nebuliser is sent to my doctor in Australia from the USA. It's not approved or available yet in Australia. (But with everything going on in the U.S., this could be quite some time. My heart really goes out to everyone in the US right now. I pray for you every day).

Some of you have had good results from Aricayce -- I really hope the same happens for me.

Good luck to everyone, Annie @anniepie

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