4 years on Ibrutinib and now seeing elevated BP

[Redlion]

Hi all,

As per title I've been on Ibrutinib for a little over 4 years (reduced dose of 140mg/day last 37 months), no major side effects and bloods all normal. However I have seen a progressive rise on my bp over the last 12 months or so from a lowish circa 110/65 to circa 175/90 which I suspect is due mainly to the ibrutinib medication. Also I believe I have had some episodes of AF but these have not been pinned down due to the occasional nature of the occurances. Currently monitoring bp daily to get a more detailed data set for submittal to my haematologist. I believe there is a known link between raised bp and this medication but I was wondering if this would be an indication of needing to switch to another alternative medication.

Cheers.

[AussieNeil Partner Administrator]

The risk of high blood pressure developing over time is the only side effect where the risk increases over time, but it's managed with medication. Other risks decrease over time. Switching to a later generation BTKi like acalabrutinib or zanubrutinib reduces the risk.

Neil

[Redlion in reply to AussieNeil]

Thank you Neil, appreciate your help and advice as always.

[CLLCalifornia-USA]

Good luck getting to the bottom of the situation. I have been on Ibrutinib for over five and a half years and I worry that it might quit working someday. I have been fortunate that bloods are good and so far no negative side effects. In the back of my mind I try to imagine what the next treatment might be. Keep us updated and best wishes. Sally

[W00dfin]

After 3 1/2 years of Ibrutinib it was stopped because my afib was not occasional. I had to have the cardioversion procedure to correct it. Fortunately I had been having normal labs except for slightly low platelets. My hematologist elected to follow me on no treatment. In November I will have been in remission on no treatment for 3 years. You may want to ask your hematologist if this is an option.

Best wishes 👍🏻

[Redlion in reply to W00dfin]

Thanks for that heads up. Had to take a break from the IB a couple of years ago due to a fractured hip and pelvis and after about seven days the dreaded swollen lymph nodes started to make an encore, so I'm not optimistic I will follow in your footsteps bit will certainly bear it mind when and if the time comes. Glad to hear of your remission and hope that it continues for you. Cheers.

[LeoPa]

I read that anorexia is accompanied by low BP. Is there an anorexic among us taking I? How would be their BP?

[Aerobobcat]

Hi Redlion, I recently posed similar questions related to Ibrutinib and high BP, my post was “Does Ibrutinib cause erratic BP?”

I am now in my 9th year on Ibrutinib and have been monitoring my blood pressure regularly and have now noticed that I am indeed registering irregular heart beats at least a couple of times a week at random times.

An example of my BP can run as low as 90/46 to as high as 2010/ 110 but both my Haematologist and GP both say my averages are good.

But my question is, what is erratic blood pressure in relation to Ibrutinib? Also has anyone been diagnosed with diastolic dysfunction of the heart?

I’m not sure if any of this is of help to yourself but it does seem to be a common topic for discussion.

My best wishes.

[Redlion in reply to Aerobobcat]

Hi, thanks for your response, it does seem that GP/haematologist not too interested in these issues and so long as bloods are good that's all that matters. Right from the start of this cll journey I've found that the only way to get what you need, as opposed to what "they" want to give you, required taking control and advocating for yourself from a position of knowledge and strength, something that this forum is invaluable to help with. Good luck with getting to the bottom of your issues.

[Aerobobcat in reply to Redlion]

Hi again Redlion, yes, what you say just about confirms my own feelings about advocating for yourself and being proactive.

All the best.

[Woodfield]

I find myself in a similar situation. Originally diagnosed with unmutated CLL in 2012 and on Ibrutinib for the last 7 years. It’s been a great drug for me and my only significant side effect is high blood pressure. Averaging around 152/93 . Been off and on Amlodipine (2.5 mg) for the last few years. My doctor at Mayo recently encouraged me to start up again on Amlodipine at 5mg daily. I’m now within the normal range at about 120/80. My oncologist is so confident about the long term future of CLL patients she doesn’t want me to risk having a serious stroke. I do wonder if one of the second generation BTK’s would resolve my BP issues without BO medication and otherwise be equally effective in combating my CLL?

[Redlion in reply to Woodfield]

Hi Woodfield,

That was something I was wondering, currently not very well informed on the 2nd/3rd gen BTKs as the ibrutinib has been so successful I've not been engaged with later versions, will have to do some digging and reading so I don't get flanneled by the haemo team. Good luck Cheers.

[jkl700]

I have ben on Ibrutinib since 2018, Started with 420, then reduced to 280 and last year have been on 140. I take Lozarton 50 for high blood pressure. No heart beat problems. But beginning to feel a bit of breathing problem, or is it just fatigue? More later. I am just clearing a lot of back log on this site.Thanks.