I've had CLL since 2011, managed with Curcumin and Dandelion Root tea. Also have paramoxal afib. Started Ibrutinib April 15 this year as spleen was huge and numbers were getting worse. Worked amazing well for 5 weeks, spleen shrunk, lots of energy, then developed constant afib. Cardiologist found I have left atrium enlargement on June 1st, had me stop Ibrutinib but won't cadiovert me until Ibrutinib is out of my sustem. now spleen is huge again and afib is causing breathing issues. Hemotolist and cardiologist can't agree on what to do and I'm going down hill fast. Hemotolgist says to take ibrutinib and no to Warfarin, cardio says Ibrutinib could cause congestive heart failure and I need to take Warfarin but they haven't given me a prescription for it. Will be another 4-6 weeks before I can get appt with either of them and I can't get cardioverted as I've been in afib for 6 weeks now with no blood thinner.
Ibrutinib and permanent afib: I've had CLL since... - CLL Support
Ibrutinib and permanent afib
There are 62 previous discussions about AFIB in our database that may be useful: healthunlocked.com/cllsuppo...
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Dr. Jennifer Brown at Dana Farber - Boston has several recent articles that suggest switching to a different drug is the best choice for patients with AFIB:
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See: onclive.com/conference-cove...
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cllsociety.org/2016/06/inte...
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openheart.bmj.com/content/6...
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Len
Waiting that long for an appointment seems odd with your symptoms. Are you living in the USA?
I was told once you have AFib, you always have it.
Hopefully you can get an appointment sooner. 🙏💕
No, I'm in Canada. We have a real shortage of doctors here, especially in the Maritime provinces - so they're all over worked and doing the best they can. I've had occasional afib for several years, treated with Propafenone as needed which worked great. Now that I'm in constant afib the Propafenone is no longer working so I've been told to stop taking it. It's scary how fast my spleen has enlarged after just 8 days off Ibrutinib. (But then it did shrink from 24.5cm back to almost normal in just 3 weeks while taking Ibrutinib).
Unfortunately this presents a not infrequent problem for patients who have AFib and CLL. You have certainly symptomatic atrial fibrillation that needs to be treated and rhythm control with an antiarrhythmic drug needs to be discussed . I don’t think that Ibrutinib is the best drug for you having had atrial fibrillation before and wonder if Acalabrutinib is available to you which has less propensity to induce atrial fibrillation. Regarding anticoagulation therapy your risk for strokes needs to weight against the risk for bleeding. Being on anticoagulation is not an absolute contraindication for Ibrutinib but increases your risk for bleeding complications. In general two scores the cha2ds2-vasc and HAS-BLED score assess the risk for stoke and bleeding. If you are on Ibrutinib I would add one point to the bleeding score. Depending where you come down on both scores it is a judgment call whether it is safe to be on anticoagulation.
If you had pre-existing afib, I am kind of surprised they started you on ibrutinib anyway. Acalabrutinib supposedly is a more targeted btk inhibitor with less rsik of afib. Its not approved that I know, but you can look into whether you can get it in a trial or get it off label.
A more likely option to me would be venetoclax. Venetoclax is arguably better than ibrutinib for some. Has your doctor not discussed that option for you?
I am not doctor, but I do not understand how getting off of warfarin will stop the afib. Afib does tend to beget afib, that is with each event another event becomes more likely. If you absolutely need ibrutinib to control your cll, perhaps you can discuss an ablation procedure with your cardiologist for your afib. My dad had afib that progressively got worse and eventually had an ablation procedure that worked extremely well for him.
Some regular cardiologists do ablations, but the ones who specialize in it are usually best.
Good point Jeff
I think warfarin might have been stopped out of fear for bleeding complications. Ablation of AFib might be an option but depending on other medial issues might also be considered higher risk (low platelets). I any case unfortunately after an ablation patients need to continue anticoagulation medication unless they are considered low risk for stroke. In other words ablations are done for symptom control and there is to date no trial showing that anticoagulation can be safely discontinued even after a successful ablation.
Thanks for the replies. My hemotolgist knew about my occasional afib but said that Paroxysmal afib didn't really count as afib. I accepted that as my cardiologist, whom I saw every 2 yrs always said that altho I had occasional afib, there was nothing wrong with my heart. I was suppose to see cardio again last November but she couldn't fit me in, I finally managed to get an apt with her 10 days ago and she had me go straight to the hospital - I was there for 4 days. They were first talking about doing an ablation or conversion and so they did an echocardiogram (TEE) to look for blood clots in heart. No clots but that's when they found the left atrium enlargement. They said that because of the type of afib I had, an ablation would not work and there no point in doing a conversion while I was on Ibrutinib as the afib would just come right back. They told me to stop the Ibrutinib immediately and put me on 5mg of Bispropolol to control my heart rate. They had me stop the Propafenone (which I was taking only as needed) as it was no longer working.
They said my cardiologist would contract me in a week or two for another echo (TEE) to check for clots and then a cardioversion. I didn't hear anything so after a week I called the cardiologist and was told it would take at least 4-6 weeks to get in for those procedures. Problem seems to be that the hospital cardio team knew nothing about Ibrutinib and the hospital hemo team just kept telling me to NOT stop Ibrutinib - but they never seemed to talk to each other. Very frustrating! The Ibrutinib was working amazingly well before the afib started. I had asked my hemotolgist if I should cut back to 2 pills or even 1 to control the afib but she said no, that I needed to keep taking the 3 (420mg total). When I get to see her again I will definitely ask about other options including Acalabrutinib.
Not sure why your hematologist did not recommend dose reduction of Ibruitnib- a lot of patients have been dose reduced with good results - not sure if dose reduction is enough to stop the afib though. Acalabrutinib would be the way to go since you responded so well on Ibruitnib, I’m just not sure if you have access to it. Hoping and praying you get some resolution/answers soon 🙏🏻🙏🏻🙏🏻
Ibrutinib and warfarin are generally not taken together but you can take ibrutinib with the newer anticoagulants like eliquis.
I believe you must be well anticoagulated to undergo cardio version. But I believe time is of the essence here since the longer you stay in permanent afib, the less likely either cardioversion or ablation will restore sinus rhythm.
Also note that if you were to lock your post you might get more personal experiences
Best of luck
Ibrutinib and Atrial Fibrillation
Ibrutinib
Off ibrutinib
Ibrutinib and A-fib
stopping Ibrutinib
