AFib Concerns: Been on Ibrutinib for 4 years and... - CLL Support

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AFib Concerns

P444ete profile image
6 Replies

Been on Ibrutinib for 4 years and now diagnosed with Afib

Anyone else have this happen. I’m quite concerned

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P444ete profile image
P444ete
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6 Replies
CaptRon1976 profile image
CaptRon1976

changing to Acalabrutinib, a second generation BTKI, may solve the problem as it causes a fib much less frequently. If you haven’t talked to your specialist yet, do so. Let us know how you do.

lankisterguy profile image
lankisterguyVolunteer

Hi P444ete,

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As CaptRon1976 says - please talk to your specialist, this is a common problem with Ibrutinib and some CLL expert doctors will engage a cardiologist to see if the condition can be treated. In other situations, they might switch you to Acalabrutinib / Calquence which has a lower incidence of the issue (but not zero).

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If those steps don't work effectively, then your CLL expert might check your MRD status and have you pause treatment until your CLL symptoms return and then begin treatment with Venetoclax with or without Obinutuzumab / Gazyva

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This has been discussed 156 times in previous posts - you can peruse them here:

healthunlocked.com/cllsuppo...

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Len

cartwheels profile image
cartwheels

i have been on Ibrutinib nearly 6 years and I started to get Afib after 18:months but with blood pressure tablets it's been kept to a minimum in fact I have less side effects now then in the start , the odd body rash but nothing really, still in remission and doing well . As others have said you may be able to change to a newer btk inhibitor which have less side effects

cll2013 profile image
cll2013

Oh yes, yes, yes - - afib while on Ibrutinib got me big time while flying across the Atlantic. I had episodes that kept getting longer until the major one aboard the plane. I was immediately taken off the med at the hospital (closest landing spot), stayed off med for nearly 2 years, then started Calquence. One year later, I have not had any afib, just some flutters for which I take Flecainide.

W00dfin profile image
W00dfin

My afib developed after 3 years on Ibrutinib. My hematologist stopped it and elected to follow me on no treatment since my labs were normal except for platelets slightly low. I had no enlarged nodes.

Unfortunately the afib didn’t go away after stopping Ibrutinib. I got referred to a cardiologist who put me on a 30 day heart monitor which confirmed the afib. I underwent the Cardioversion procedure where they administer an electric shock to the chest while under anesthesia. That was almost 3 years ago and the afib hasn’t returned. However I am on Eliquis “for life” according to my cardiologist.

The good news is that Ibrutinib put the CLL in remission.

Best wishes!

morepork profile image
morepork

Like Cartwheels answer, I developed (so far) self limiting episodes of A/Fib some months after starting Ibrutinib . Cardiac workup in 2017 did not indicate concern though the Cardiologist had never heard of Ibrutinib & its proven side effects and therefore treated my input as from some ignorant underling who should not question his view that it was " just due to your age'. I'm on a minimal dose of a an ACE inhibitor to control my B/P and so far so good . [non possibility to change to Acalabrutinib here ]

Best of luck with the Ibrutinib (I'm on 280 mgs)

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