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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)Comment receiving replies
@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
Replies to "@anniepie I have just been diagnosed with the long QT issue, my QT was 458 and..."
Good luck with this specialist appoinment tomorrow Heather.
Don't worry too much. The long QT could be transient -- I sure hope so.
It can be caused by many different medicines for all sorts of things -- so I'd check what you are taking now. (I know you seroconverted last year -- YAY ! So it shouldn't be any of the NTM meds you took. Long QT usually stops after NTM meds are ceased and they leave your system. That's many months ago now).
It is a rare side effect. But when long QT occurs from medicines it's usually not too severe for people. Often it only causes elongations of the heart's QT wave up to 30 milliseconds of delay (for example, up to around 470 or 480 ms).
It really only becomes a serious risk around 500 ms delay or longer — which is what happened to me.
(But I also developed hypokalemia -- very low potassium. That's also a rare side effect of the NTM meds).
Fingers crossed all is good now.
Please let us know.
Hugs from Annie x
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Hi it’s jennifer what is Qt issue and please tell me what made the head stop omg please take care of yourself and let us all know how your doing