1.5 million atrial fibrillation cases may be u... - CLL Support

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1.5 million atrial fibrillation cases may be undiagnosed in US (prevalence estimate of 11%)

AussieNeil profile image
AussieNeilPartnerAdministrator
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An analysis of five U.S. medical claims databases suggests as many as 23% of 5.6 million to 6.6 million presumptive atrial fibrillation cases are undiagnosed, with many undiagnosed patients likely eligible for oral anticoagulant treatment.

- The estimated U.S. prevalence of AF (diagnosed and undiagnosed) in the third quarter of 2015 was 5,628,000 cases, of which 11% were undiagnosed.

healio.com/news/cardiology/...

Regular readers would be aware that one downside of BTKi inhibitors, is the increased risk of developing atrial fibrillation. While that risk is lower with the second generation approved drugs acalabrutinib and zanubrutinib, it's still higher than if you were not taking the drug. Also, while the risk of most adverse events from BTKi treatments reduces over time, including the risk of atrial fibrillation, the risk of developing (treatable) high blood pressure increases (see attached image from the long term 5 year follow-up of ibrutinib treatment). One of the benefits of having CLL, is regular blood tests and medical check-ups, but if you have cardiovascular health issues, a BTKi drug may not be the best treatment choice for you. The above research supports the recommendation of some CLL specialists of arranging a check of your heart health as part of the decision process for your treatment choice.

Neil

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Sushibruno profile image
Sushibruno

hi Neil, this post came right on time. I was going to Cancel my cardiologist appt. And because of this post I’m no longer doing it. Besides btk’s venetoclax, obitusimab what else is out there? I know there are more but not fda approved yet. I often think about these medications failing and running out of options. This runs through my mind all the time.

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toSushibruno

It's certainly worthy of the peace of mind to continue with your cardiologist appointment, now that you are on a BTKi. Early intervention if something is detected is key to living a normal life expectancy. Think on those doing this - 20+ years after FCR, 10+ years on ibrutinib, not the failures,. Otherwise you aren't enjoying the years that you have!

Neil

Sushibruno profile image
Sushibruno in reply toAussieNeil

thank you Neil, I have a long way to go. I know I need to be more positive.

Big_Dee profile image
Big_Dee in reply toAussieNeil

Hello AussieNeil

That is indeed one of the blessings of having CLL, the continuous health monitoring.

Thanks for the heads up AussieNeil. I've been dealing with a funky form of A-Fib (diagnosed) since 2009. Right now, I'm on venetoclax monotherapy and doing well. The good news for me - my A-Fib is episodic. The better news - I haven't had an event since Aug 2022.

I don't take a lot of cardiac meds - low dose metoprolol (25mg QD) and low dose digoxin (125mcg QD) + a blood thinner, Eliquis. Just saw my cardiologist this month. She is very pleased with how things are going.

Even though the newer BTKi agents are less inclined to cause A-Fib, my hematologist and I are very hesitant to jump on that 'treatment train' should the time ever come.

lexie profile image
lexie

My home BP monitor has an irregular heat beat alert function which is a useful tool between doctor appointments. I had irregular rhythm when I had hyperthyroidism 30 years ago but still use the BP monitor daily now. I read that it picks up A-Fib.

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