Tachycardia and Ibrutinib

[MovingForward4423]

So after 2 1/2 years with pretty much zero side effects on Ibrutinib, I ended up in A&E with Tachycardia. My heart raced to 178 and BP was 165/110. It would seem I had an infection that pushed me into Tachycardia, and I couldn’t get out of it. Spent 8 hours waiting for the rate to come down whilst being treated for a suspected sepsis. I’m completely fine, and I was sent home in the evening on the same day. Waiting to speak to my consultant on the next steps….I would suspect a move to Acalabrutinib. I’m so annoyed because I have done so well on ibrutinib. No side effects and complete control of my disease. I guess these major events are a risk to us all…..

[Newdawn Administrator]

Sorry to hear this. I’d been on Ibrutinib as part of a clinical trial for 15 months when I had to stop due to severe arthralgia and myalgia. Within days I developed severe tachycardia and very elevated b/p which, like yours, couldn’t be brought down in A&E. There was no sign of infection however. After a night in hospital I was sent home and being in the midst of the pandemic, little follow up happened. Eventually I had an echocardiogram and no abnormalities were detected but I’m now permanently on beta blockers and the issue seems to have resolved. I’m pretty certain it was the cardio toxicity profile of Ibrutinib but the clinical team seemed to attribute it to stress. I continued on Venetoclax monotherapy.

Best wishes going forward.

Newdawn

[MovingForward4423 in reply to Newdawn]

It shocked me that this was so sudden. My consultant is convinced that Ibrutinib was the cause and an infection was the trigger. I’ll keep you posted on how Acalabrutinib works out.

[Newdawn Administrator in reply to MovingForward4423]

Yes mine was very sudden too and I was admitted to a non haematological assessment unit who didn’t know how to spell Ibrutinib let alone understand it’s toxicity profile. Interestingly, it was soon after this that the instruction was issued that patients on Ibrutinib should have an echocardiogram.

Best wishes,

Newdawn

[morepork in reply to Newdawn]

That's interesting and I must check with my NZ haematologist, as my episodes of A'Fib were seen as being 'due to my age' by the cardiologist here when I had a cardio workup - - .He had never heard of Ibrutinib and refused to listen when I showed him a scientific paper showing A'Fib as a side effect. [ Acalabrutinib has not been available here as a substitute] He was one of those doctors who talk down to you as though you are 6 years old - grrr.

[Tomich1949 in reply to morepork]

Hi Morepork, I too have a nz haematologist who is fantastic but I am also getting a lot of A fib and elevated BP, which can be quite stressful at night . There is a lot of evidence to support that Ibrutinib has this side effect, can’t understand why some Doctors can’t just research like we all do.

[MovingForward4423 in reply to Tomich1949]

Afib is dangerous and can cause stroke. Ignoring the side effects of Ibrutinib is terrible.

[Newdawn Administrator in reply to morepork]

Just to add that I was not found to have AF following extensive tests but AF has indeed been established as a risk associated with Ibrutinib. I’m afraid some doctors do have egos which exceed their scientific inquisitiveness 🙄

Newdawn

[CityL in reply to morepork]

I had the same reaction from my cardiologist. I talked to my oncologist and he told me to immediately stop Ibrutinib. I stopped Ibrutinib immediately. I then had an Ablation to get rid of the AFIB and it worked. No meds, just monitoring it with chip in chest. Been off Ibrutnib for 3 years now. Back to watch and wait. Numbers are good.👍

[Sushibruno]

So sorry, this is why im so reluctant about getting treated. And where most of my anxiety comes from.

[MovingForward4423 in reply to Sushibruno]

What do you mean?

[Newdawn Administrator in reply to MovingForward4423]

I think Sushibruno meant ‘reluctant’ rather than ‘adamant’. She’s afraid of treatment side effects.

Newdawn

[Sushibruno in reply to Newdawn]

Thanks Newdawn

[Sushibruno in reply to MovingForward4423]

Sorry about that.

[Mtk1]

It is possible that it was caused by infection and not medication, I started acalabrutinib in August 2021 but had to stop because of angina after 10 weeks. I started again in February 2022 but had a heart attack 3 weeks later so stopped medication again, thankfully I’m now doing well after having stent fitted and I’m now back on acalabrutinib again, I’ve been on 1 tablet for 6 weeks and as of yesterday back on full dose, hopefully this time I can keep going a bit longer, but I’m feeling good and back cycling and restarting my Boxersise classes this Saturday. I have no idea if acalabrutinib caused my heart troubles or not, it could be just coincidence and as my consultant said yesterday we will see what happens.Good luck Dave.

[MovingForward4423 in reply to Mtk1]

Possibly but the toxicity profile shows Ibrutinib can increase the chance of tachycardia. Acalabrutinib does not have the same off target affects as Ibrutinib. My consultant said they know it is much safer in regards to the heart.

[MN1999]

I have been on Ibrutinib for 2.5 years. There were miserable, major side effects for the first few months which lessened after reducing the dose to 280mg. My first episode of tachycardia (PSVT) happened a year later, lasted about 3 hours, and seemed to be in conjunction with an accidental exposure to carbon monoxide while camping. I went off Ibrutinib for a short while and saw a cardiologist. I wore a monitor for a week and was diagnosed with the PSVT with a heart rate of over 200 for short periods. Most of the episodes were very brief at that time and non-symptomatic (i.e. no chest pain, shortness of breath, sweating, etc.) A few months later the episodes stretched out to several hours but the only side effect was exhaustion. I keep a prescription of Metoprolol handy in case the PSVT recurs and is symptomatic, but haven't had to take it so far (knock on wood). I think it helps that I quit drinking regular coffee (one of my favorite things in the world) and haven't had a long episode of the tachycardia in over a year. I have a 'Wellue' home cardiac monitoring unit by ViHealth that I use to occasionally monitor my heart rhythm and can sent a PDF file to my cardiologist if necessary.

[Judyanne]

According to the Frontier Cell Development Biology article 3/11/21 comparing ibrutinib, acalabrutinib and zanubrutinib trial data, the rate of a fib was 10-17% all grades for ibrutinib, 1-7% for Acalabrutinib and 0-5% for Zanubrutinib. Grade 3 or greater was 1..6 to 9% for Ibrutinib, < 3% for Acalabrutinib and <2% for Zanubrutinib.