Does anyone with AFIB NOT take blood thinners?

@janet23 you are an inspiration! @californiazebra my afib started 6 months after I started.letrozole for breast cancer. I don't think it is correlated but who knows!

Jump to this post

@windyshores
I started letrozole at the same time I started Kisqali. Hmmm. I blame Kisqali because it can cause QT prolongation as well and that happened to me. Only 4% of people have the side effect. They lowered the dose to stop the very dangerous QTP that can cause you to just drop dead and it stopped on the lower dose. Afib started that first week of treatment as well so it seemed to be a safe assumption. Maybe it's Kisqali, maybe Letrozole or maybe the combination. Either way, I'll be taking both meds long term.

Jump to this post

Hmmmm I have "borderline" QT interval prolongation, sometimes actually long (one time it was 504QTc, last time 462 QTc). I am nervous about zofran, azithromycin and other meds that prolong it. Since it is only measured during afib I have asked if afib prolongs it but I have been told no.

Jump to this post

@windyshores
How long have you had your borderline QT interval prolongation? Did it start with meds? Mine was at 499 on 600 mg Kisqali, then dropped to 459 with 400 mg Kisqali, but then started creeping up to 472. My oncologist told me 480 is the threshold we have to stay underneath, but I've read 460. I recently asked him to do another EKG since it had been 18 months. He was reluctant because he said it's not standard protocol. Well, I think once you've had QT prolongation from Kisqali (rare side effect) that you should be tested occasionally. He pushed it off until I had my labs, but that was during my one week off Kisqali (3 on, 1 off) so I had been off of it for 4 days meaning the QTc could have gone back to normal if it had been elevated. Now I still wonder what the score is on the last day of my 3 weeks on.

What were you told the QTc threshold is? Is your doctor concerned about your scores? Which doctor is monitoring it?

Jump to this post

I was told 460. Not a single doc has raised this issue. I raised the issue myself it when prescribed Zofran. We have to protect ourselves.

I have COVID despite continued masking and was prescribed Paxlovid, which can prolong the QT interval but no doctor I could reach cared, and urgent care would not do an EKG. I developed an arrythmia the next day (Kardia says supraventricular ectopy but it read constantly, and ER said atrial fibrillation.) So I got my QTc score from the EKG and it was down to 450 (I have had 460's, 480's and one 504 but during afib. I actually found info that confirms that can raise the score).

ER doc and cardiologist said that COVID was causing the arrythmia but I stopped the Paxlovid on my own and heart stabilized. I reported it to MedWatch just now. I found an online FDA warning that the med can interfere with the heart's electrical system. But docs told me to continue with it!

I truly believe this was life-threatening. Again, we have to watch out for ourselves in this world. That's all I can say. I am hoping no damage was don to my heart. Yesterday I could not get out of bed because I had afib whenever I did! I am not on blood thinners and ER didn't mention that either. I am alone and felt so unsafe with no help despite contacts with MD's.

Jump to this post

I was told 460. Not a single doc has raised this issue. I raised the issue myself it when prescribed Zofran. We have to protect ourselves.

I have COVID despite continued masking and was prescribed Paxlovid, which can prolong the QT interval but no doctor I could reach cared, and urgent care would not do an EKG. I developed an arrythmia the next day (Kardia says supraventricular ectopy but it read constantly, and ER said atrial fibrillation.) So I got my QTc score from the EKG and it was down to 450 (I have had 460's, 480's and one 504 but during afib. I actually found info that confirms that can raise the score).

ER doc and cardiologist said that COVID was causing the arrythmia but I stopped the Paxlovid on my own and heart stabilized. I reported it to MedWatch just now. I found an online FDA warning that the med can interfere with the heart's electrical system. But docs told me to continue with it!

I truly believe this was life-threatening. Again, we have to watch out for ourselves in this world. That's all I can say. I am hoping no damage was don to my heart. Yesterday I could not get out of bed because I had afib whenever I did! I am not on blood thinners and ER didn't mention that either. I am alone and felt so unsafe with no help despite contacts with MD's.

Jump to this post

@windyshores
I'm so sorry to hear you have COVID, the heart issues and a lot of doctors that don't listen. Most doctors just won't listen to anything you say if it's outside the norm. They treat 100% of people based on how 80-90% respond. They should have listened to your history especially since they can tell they are talking with an informed patient like you. Scary and frustrating. Good to know about Paxlovid. I can't believe they wouldn't do an EKG at your first ER visit. Also scary that afib can raise the QT score. I hope you feel better soon. Sorry if you're missing out on Thanksgiving plans as well.

Since I live alone too, I understand your concern about that. I live in a retirement community with lots of single women. One single neighbor and I exchange a daily text message between 9 am - noon each day to be sure the other is okay. If no word by noon and no response, time to check. Do you have a neighbor or relative close by that can do that and has a house key to check on you if needed? Maybe they can check every few hours until you're better. I actually started doing it because I was afraid if something happened to me, my dog would be trapped alone in here. My dog is gone now so one less worry.

I've been in afib the last 36 hours which is concerning since I've never had an episode last this long. Hmmm. Normally, my heart is back in rhythm within 12 hours and my heart rate slowly goes back to normal within 18 hours. Right now, my heart is still out of rhythm and my HR is still over 100 when 60 is normal for me. Makes me very tired. Blood pressure usually drops too. Haven't checked. I'm not on meds due to reasons mentioned previously. I don't like the timing either. Fortunately, I'm not hosting Thanksgiving, but still need to shop and contribute a dish. I'll put off shopping and food preparation until tomorrow and hope everything is back to normal by then. I went a little over a month without an episode so I thought things were looking up with this darn afib.

@janet23 I like the pill in a pocket approach vs. taking meds full time, but it's the fear of taking them for the first time that scares me. Ever since I took Multaq for afib years ago and felt horrible with all the symptoms of a heart attack for 3 days before I stopped, I'm afraid of heart meds. I'm also afraid of blood thinners since I rarely have the normal reaction to meds. My cardiologist did give me flecainide a couple years ago, but I never tried it. Expired and tossed it. He didn't tell me you can take a blood thinner on an as-needed basis though. Still fearful of that. Thanks for your input. Leaves me with good questions if I have to go in again for this.

Jump to this post

@windyshores

I am very sorry to hear you are going through this. You are not alone.

My EP doc told me if I went into AFib and flecainide did not bring me back into sinus rhythm after a couple of days, to make an appointment for a cardioversion and to come in fasting. Start Eliquis twice a day. If you don't have an EP doctor, it is a good idea to start seeing one.

When you see your cardiologist or EP, discuss the pill in the pocket approach to always carry an anti-arrhythmic and anticoagulant with you. I have both prescriptions on my med list as " as needed" meds. I always carry them with me.

If you continue to feel poorly or are not hearing back from your cardiologist, go back to the ER. I had many visits to the ER in 2020 and 2021 because I was passing out in stores, chest pain, dizzy, hypoxic, etc after Covid and Covid shots. I won't take another flu shot or any vaccine ever.

In addition to your Kardia, you may want to check your blood oxygen level with an oximeter, and blood pressure.

I hope you feel better soon. Keep us posted.

Jump to this post