Hi folks. I'm still on imbruvica but they put me on a does of 280 mg after the rapid heart beats daily to 150 bpm. It was NEWS to them that my verapamil increased the effects of the imbruvica -- I learned that from the interactions checker. Looks like no one checked before they disposed! I am still getting rapid heart beat daily this time in the range of 90-120 at resting state. Any one else had daily rapid heart beats? I made the decision to drop my current doctor and switch to another and want a different recommendation than imbruvica. I have a history of AFIB and rapid heart beats as well as PVCs. I feel this should have been taken into consideration before I was prescribed imbruvica. I looked up what happens with continual rapid heart beat and it can cause you to get less oxygen to organs and result in cardiac failure which we already know is a side effect. Just wondering if others experienced this level of rapid heart beat for this long.
Imbruvica and rapid heart beat: Hi folks. I'm... - CLL Support
Imbruvica and rapid heart beat
acalabrutinib also known as calquence has less afib issues also cy3pa inducers/inhibitors-i forgo what your verapamil is can increase/reduce levels of ibrutinib but that does not necessarily affect heartbeat
i'll look into it. Thanks.
Have you gotten another Dr. who knows more about CLL? In your earlier post that seemed to be a great need. This situation coming to light makes that need even greater. You need a hematologist/oncologist who knows blood cancers and particularly CLL.
While we can suggest other treatments that have been had by others, it is not helpful if you do not have a Dr. who will do the work of looking at your overall health as well as your particular type of CLL---we are all different in so many ways.
Acalabrutinib is in the same family of BTK inhibitors as Ibrutinib---it has been said to be lighter in side effects, but it has not been used long-term to show it would not be a problem in the area of AFIB, especially in a person who already had palpations prior to Ibrutinib treatment.
My doctor is a CLL doc and a hemotologist/oncologist - he is compromised by his situation let me put it at that which takes his attention away from his practice and causes him to cut corners which he should not do "do no harm." Tomorrow I'm requesting a transfer to another doc at that clinic who I want to look at my case with fresh eyes. Imbruvica is just not for me given my health history.
Good on you! You deserve a new Dr. Best Wishes to you.
Let us know how it goes.
Good for you to get new doctor to reassess your specific situation and help you with your decision what to do next.
My cardiac history is the main reason for not wanting to risk Ibrutinib, even though, it seems to be the best treatment with no issues for a lot of people.
Very best to you azgal1953
Dana
When I needed to start taking something for increasing BP, my doctor, who knows that I research everything to the nth degree, suggested that I determine which of the various types of BP lowering meds would be best with Imbruvica. She knew I wouldn't trust her decision anyway, and would investigate on my own.
One of the things I read is that Calcium Channel Blockers were contraindicated with Imbruvica, and ACE Inhibitors were safer.
As usual, "managed care" means that we must manage our own care.
And by the way, I've been on 280mg Imbruvica for a year, and my heart rate has still been increasing during the past month. Personally, I don't necessarily trust that Calquence will be better than Imbruvica with regard to afib. It took many years for the trend toward high blood pressure and afib to be noticed with Imbruvica. Since Calquence has been used mainly in clinical trials until now, and patients with comorbidities are typically excluded from trials, I'm guessing that once it is used more broadly in the general population, which will include those with a predisposition toward cardio issues, the same trend will be observed. I hope I'm wrong. Nevertheless, I consider the jury still out until Calquence hits its 6 year mark.
These drugs come with great hope and keep us alive. They also come with downsides. As usual, it comes down to risk vs reward.
As soon as I hit week 3 on imbruvica the daily high bp's kicked in again. I am requesting a new doctor at the clinic and want him to look at my case with fresh eyes. I don't think I should have been given any drug that aggravates rapid heart beats and afib.
While it would be nice to think that doctors such as an internist, dermatologist, cardiologist, etc, will be up to date on all the facets of these new targeted medications, I think it's unrealistic to expect that they will have the knowledge of a CLL expert. They just don't have the time, which is why there are experts in different fields.
We need to protect and take responsibility for ourselves by becoming an expert about our bodies so we are part of the learning and conversation. As Andrew Schorr of Patient Power says, "Knowledge is power." I educate my doctors. They take in the information appreciatively, and sometimes follow through by talking to my oncologist to clarify a point if they feel there is a need.
When I first began taking Imbruvica, I copied the drug interaction list from one of the spec sheets online and printed it. I carry a copy with me at all times, and pull it out whenever a drug is being considered by a doctor. My doctors are grateful and ask if they can make a copy to keep in my file for future reference. Having the list on hand helps make quick decisions about whether a proposed drug is okay or not, and it saves my taking something that could be deleterious.
On one such occasion, when I had a bug bite turned into a major infection, my oncologist told my dermatologist that treating the infection was more important, at the moment, than the CLL. He said I could stop the Imbruvica if the only drug that would attack the infection was contraindicated. An acceptable drug was proposed instead, and I continued the Imbruvica. As usual, it's all about risk vs reward.
I live by the words of Hillel: "If I am not for myself, who am I? And if I am not for others, what am I? And if not now, when?"
Yes it's important to be proactive. The imbruvica interaction sheet did not list verapamil the drug I take. I found that out by running all my meds through it with imbruvica. And i expect my doctor to be up to date on my medical history. in this case, the drug was proposed without considering that.
My oncologist stopped the Imbruvica two months ago after my GP referred me to a cardiologist for afib. He is following me on no replacement medication with flow cytometry every two months to monitor for relapse. I have occasional rapid heart beat (100+) according to the heart monitor I wore for 30 days. I am scheduled for the Cardioversion procedure to get the heart back in rythym.
Interesting. I have only been on imbruvica for 2 months and rapid heart beat started first month. Thank you and good luck to you.
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