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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
Hi Terri @windwalker. I'm back now. (Sorry I haven't been online for a while. Fell off the horse -- as they say -- but I'm trying to ride again!) The Pulmonologist had me start back on the drugs at a lower dose at the moment. Unfortunately nearly all the TB / NTM drugs can cause long QT heart problems in susceptible people. And my Cardiologist says it's inevitable I will get long QT from the drugs again. So my primary care doctor is now monitoring my EKG every week. It has been a very tense time for me. (Should I continue with the drugs when I have refractory NTM now anyway, and these drugs could make my heart stop at any time???).
I am taking the drugs but having a few days off for Christmas!
What a year! Hope everything is okay for you -- please take care
Love from Annie x
Replies to "Hi Terri @windwalker. I'm back now. (Sorry I haven't been online for a while. Fell off..."
What a hard decision! I will say that when I was on the meds, I did stop for a few one week intervals, with the docs' blessing, to allow my body to recover a bit. No heart issues, but fatigue and nausea that made life miserable.
Good luck with being able to tolerate, for a time anyway, to get things back on track.
Do you also neb with 7% saline? I think this has kept my MAC at bay for the past year without more antibiotics.
Sue
@anniepie I have just been diagnosed with the long QT issue, my QT was 458 and now it is 478 so I have been having lots of tests, I go back to cardiologist on 15 Jan to get results. These drugs are very hard on us, but also can save our lives. I did not know they can make your heart stop, that is scary. We are in this together Annie. I will let you know what happens. Take care Heather
Hi Annie. So sorry to hear that you are having this issue with long QT. I had similar issue and even fainted once. I had my heart deliberately stopped by parametics and re-started back in 2015. Mine was diagnosed as superventricular tachycardia. I wonder what the difference is between that and long QT? Anyway, I was never on the Big 3 meds, so those were not behind my heart issue. I also want to add that in all of my reading of case studies involving mac/bronchiectasis; many patients also experience heart issues. It seems to be one of the co-morbid 'sister' ailments that come with lung ailments. I hope you can get your heart straightened out; I know how scary it can be.
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@anniepie Oh, Annie...what a dilemma. I hope you can work out a medication regimen that you feel comfortable with. Good luck and my best wishes to you. Kate xxoo