(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Hi at @anniepie thank you so much for that, I went to my specialist yesterday and he said the same as you, you smart cookie, I had the Halter on for 24 hours and he said my QT went from 460 to 493 so it is ok and I can stay on the meds, yay. Thanks for telling me about the low potassium, I will keep an eye on that, it must have been scary going over the 500 delay mark, Hope you are doing ok. Heather

Hi @heathert -- what meds are you on now?
I hope the long QT settles for you (and me). 493 is getting up there a bit. I hope it goes down for you soon. I had a halter for 24 hours too -- what fun.... not.
My GP (main doctor) does the ECG for me every 2 weeks while I'm back on the big 3, at a lower dose than before.
(Do you call them GPs in NZ?)
Maybe you could get your ECG done at a GP once a month to keep an eye on things?
The Cardiologist put me on a low dose of potassium slow release tablets to reduce the chances of potassium going down again -- so that's a help.
You've got a new ID picture I think -- is your hair lighter now? (You look great, dammit!). I refuse to use a photo until I look better, laugh.
Annie x

Hi Annie. Thank you for the well wishes as covid is ravaging some of our states. I am praying that your arikayce and nebulizer arrive soon. Thank you for posting that the Long QT is rare so that people don't shy away from treatment. Has your heart settled down yet? Hugs - Terri

@anniepie I am on azithromycin, rifampicin and ethambutol again. I will do the monthly ECG like you say and also eat more potassium, great ideas, I have bought some bananas, I dont think I have much potassium either. yes my hair is a bit lighter. Looking forward to seeing your new profile pic! Take care Heather

@heathert It is likely that Azithromycin is the cause of your prolonged QT see page 38/58 of this pdf from Dr Huitt at NJH.
https://www.nationaljewish.org/NJH/media/ProEd/NTM%20Provider%202019/Huitt-Drug-Side-Effects.pdf Have you had a Susceptibility test on your sputum that shows what antibiotics are best to use for you?

@poodledoc thank you for that, I will have a look. My dr said the same thing the azithromycin is causing it, he said that if it goes over 500 then he would look at taking me off it , I will have regular ECGs, My pulm dr really wanted me to stay on the big 3 as my bugs were suseptable to them, now it is a waiting game. Take care Heather

Hi again Terri @windwalker Thanks for asking -- today I think the heart's okayish. But the long QT goes up and down and sometimes quite quickly over a few days. I stopped all meds for 4 weeks -- it was great! Now I'm back on them but on a much reduced dose. The meds still cause changes in QT and I have to watch it.
I hope your SVT is behaving itself -- do you get tachycardia with it often ?
Yes the long QT over 500 ms is very rare really for people on the NTM meds, so nobody should worry much about it.
Just looks like Heather and me have to be more careful. (She's the one with the good looks, laugh).
Like many people I was glad to see the end of 2020 and hoped Covid around the world would go away quickly in 2021 -- but not so fast, it seems. Please keep safe Terri -- and everyone else on this group.
Hugs to you too Terri

You're right @poodledoc. The Azithromycin is a known culprit for the few people on it longterm who develop higher millisecond rates of Long QT. It's an hERG blocker and tends to make people urinate out more potassium than normal.
(Does the name Poodledoc mean you are a veterinarian -- or do you just love dogs, like me?).
In Australia, the standard susceptibility testing they do is not fancy -- it usually first off just tests for susceptibility to Clarithromycin. Only if that's not susceptible then they try susceptibility to other meds. But I don't know about New Zealand where Heather is.
Annie

Oh no, back on the NTM meds! I really hoped the Arikayce would clear you up for longer. But I guess it's all just 'pot-luck' really, as we say in Australia.
Are you on them every day again?
I've been put back on the drugs at 3 days per week instead of every day. I'm not on Rifampicin because it caused havoc for me for a year and interacts with too many other meds I need to take.
I'm on Clofazimine instead, with Ethambutol and only half a tablet of Azithromycin -- 250mg. Unfortunately both Clofazimine and Azithromycin have been known to cause Long QT, so it's a bit of a double-whammy for me.
My Cardiologist says it's inevitable that I will get risky Long QT intervals again while on these 2 meds -- but there's not much choice really. Just have to watch it, and stop the meds again when it happens.
Yes please keep an eye on it with monthly ECGs, Heather.
We really ARE in this together
Hugs from Annie

Hi @anniepie, my Dr says that Arikayce is good to clear mac up for a while but like the other meds it often returns, unfortunatly. Yes I am on the big 3 daily, but apart from the QT interval its going well, I will keep an eye on my ECG like you. I hope your pills are not causing trouble. We are not far from each other,what part of Aussie are you in, hope aussie covid is improvng. We are in this together, which helps alot. Take care Heather