atrial fibrillation and shortness of breath

[Flip123]

I was diagnosed back in February of 2021 with CLL and almost immediately went on Calquence twice a day 100 mg. It took approximately 3-4 months for numbers to come back in the normal range and they have been fine ever since. However, recently I have been experiencing atrial and shortness of breath every so often. I can tell when it is starting to become a problem because a few days before I have an event, I start to feel a slight increase in how my heart is beating in my chest. Meaning , my heart starts to race and feel like it’s beating harder. At this point I don’t feel any different physically, but I know that it will ramp up over the next couple days and then I will have a bigger episode. The episode almost always happens first thing in the morning and I feel like I’m going to pass out and get very short of breath.

The only thing I have done so far to deal with it, is I immediately take apple cider vinegar and raw honey with seltzer water and within about 10 minutes the symptoms start to subside. I get this weird warm feeling throughout my body that feels like my blood starts to flow better and my heart rate slows and blood pressure drops back to normal.

Does anyone else have this issue and would asking my doctor to cut back on the dosage help?

[cajunjeff]

Flip, to my understanding that while calquence carries a lesser risk of afib than ibrutinib, all btk drugs carry that risk. It’s not entirely clear to me you have afib, it certainly could be. And no one I think would be able to say for sure your afib was caused or worsened by calquence.

If you have afib, I would suggest seeing a cardiologist who treats afib. Afib can be well controlled with a variety of heart rate or heart rhythm drugs. A problem with afib is that untreated afib will usually worsen with more frequent and more serious episodes over time.

I dont know if vinegar and honey and such help. I can’t imagine it hurts much. It wouldn’t seem a substitute to me for taking proper afib meds.

Whether you should reduce your dose of calquence is totally a question for your doctor. I personally would let both my Cll doc and my cardiologist know and ask that they consult together about how best to treat me. A cardiologist might not know a whole lot about how what calquence is or how it triggers afib and a Cll doctor might not know all the options to treat afib.

I can say this with reasonable certainty after having a lot of experience helping my dad manage afib, that afib begets afib, meaning afib tends to get worse with each episode If all you are doing is self treating with honey and vinegar, you might be allowing your afib to considerably worsen by not stopping the episodes.

You can get helpful feedback on here from others with afib and such, but I would see a cardiologist and loop in your Cll doc.

[studebaker in reply to cajunjeff]

I second cajunjeff’s advise about seeing cardiologist about your problem.

I am the unlucky one who had to be taken off Acalabrutinib after it working very well for 8months. I ended up with permanent atrial fibrillation and it took my cardiologist some time and a lot of tweaking of meds to stabilize me to the point that I don’t feel my AF now even though ECG always registers them.

Your special drink treatment is not the substitute for seeing cardiologists in my opinion

I wish you good luck and hopefully yours will not be a permanent AF

Dana

[Vizilo]

I think you should take cajunjeff’s and studebaker’s advice and see a cardiologist. I had been on Calquence for 2 years when I developed afib. Usually they occur every 4-6 weeks and clear within a few hours on their own. My cll specialist did not think it was Calquence and my family doctor referred me to a cardiologist who also did not think it was the Calquence. He prescribed a slight increase in beta blockers, a low dose blood thinner and a water pill to increase my potassium levels. I’ve been on this regimen for 6 months and, knock on wood, I haven’t had an afib event in 3 months.

I’m not negating your concerns but go see a cardiologist to be sure

[kitchengardener2]

Yes, I can identify with all you say. I will mention it to my consultant in January. I am 71 years old diagnosed in 2018 but began Acalabrutinib in 2021. I generally feel very well but like you I am more breathless. I am somewhat in denial about Artrial Fibrillation which was first suspected about two years ago following a nasty accident. I suffered a really badly scalded leg after falling with a kettle full of boiling water. I hadn't previously had heart problems so I felt that it was possibly down to shock plus medication given in the ambulance. I had various tests znd investigations and saw a cardiologist and she was happy with my heart. However I agreed to add Apixaban to my daily routine. I do think maybe it is intermittent but don't know if the Acalabrutinib is to blame. I am reluctant to stop Acalabrutinib because it's controlling my CLL so well.

[MovingForward4423]

Sounds like palpitations and possibly tachycardia. YOU NEED to see your consultant. Although Acalabrutinib has less side effects on the heart than Ibrutinib, they are still possible and can be very dangerous and even result in death. I had an SVT on Ibrutinib and had to come off that treatment immediately. It may be unrelated but never leave possible side effects unreported.

[SLLJOHN]

Interesting string of comments here. I developed Afib 2 years ago, probably due to Ibrutinib but at 65 years old who knows I may have developed it without Ibrutinib? I saw a cardiologist who managed it for awhile with the usual combination of blood thinners etc. After awhile she suggested an electro cardio procedure which made me feel so much better (restored energy levels). However the Afib became anAtrial Flutter which was treated with an ablation 9 months ago and I have not looked back. I also changed to Alcalabrutinib, 1 tablet a day 18 months ago.

[Tucano]

Hi Flip123. I agree with everyone on the importance of seeing a cardiologist. Also as important is getting the correct diagnosis which leads me to say that getting a second opinion to confirm diagnosis and treatment is good. Wish You a positive outcome .