Suspending Ibrutinib

[GreyB]

I am in the UK and Ipresently take Ibrutinib and Venetoclax as treatment for CLL however I have received a call from my hematologist saying that because I am on medication for blood pressure I should cease taking the Ibrutinib and wait for further updates. Has anyone else received a call?

[Newdawn Administrator]

Yes there’s been a few posts on this issue recently Grey and it seems to be due to some adverse cardiac/blood pressure interaction they’ve uncovered between Ibrutinib and Angiotensin-converting enzyme (ACE) inhibitors (names usually ending in pril). Some people have had their b/p meds changed. I’d already stopped Ibrutinib but they rang to discuss ‘just in case’. An ACE inhibitor can be essential for those people who use it to protect the kidneys as well as for b/p issues.

Hopefully your doctor will suggest a way forward. Hope your gastric issues have now eased on Venetoclax.

Newdawn

[GreyB in reply to Newdawn]

Thanks Newdawn. Gastric problems resolved by taking Venetoclax late evening instead of first thing in the morning. Stopping Ibrutinib a bit worrying as things have gone really well now being in remission. Hopefully things will be resolved soon.

[Newdawn Administrator in reply to GreyB]

I had to stop taking ibrutinib for other side effects and I’ve done really well on mono Venetoclax. Glad the gastric issues have eased 😊

Newdawn

[GreyB in reply to Newdawn]

Thanks Newdawn its encouraging to hear results are still good after stopping Ibrutinib. Take care

[Doremefasol in reply to GreyB]

Just curious, do you take full doses of Ibrutinib and Venetoclax while taking both of them, or the doses are reduces, and less than they would be in monotherapies???? Thanks

[Davidcara in reply to Newdawn]

Wondering if anyone knows what the cardiac issues are. I have been in Lisinopril for years, I have not heard anything from my MD. I guess I will need to investigate further. Knowing my MD, he will say since ibrutinib is working so well, let’s change the Lisinopril.

[Newdawn Administrator in reply to Davidcara]

It would be useful to know the identified nature of the drug interaction I agree. I’m wondering if we have a qualified pharmacist amongst our members who can advise.

Newdawn

[Davidcara in reply to Newdawn]

I did email “ask the pharmacist “ but have not heard back yet.

[Davidcara in reply to Davidcara]

And of course I finally got my BP under somewhat control with three different agents

[Lulu8581]

I stopped ibrutinib last year and went solo on venetoclax and now I am in remission and off venetoclax so it is all good. Good luck!

[Catnap7]

Hi Grey My hematologist ended up stopping my Ibrutinib/Venetoclax 2 year trialONE month early due to a huge increase in BP I have always been around 110/60 Well the month before it was to end it shot up to 185/I think (over)90 Holy Smokes!!!

I was speeding It really scared me... so happy to end at that point I did get into remission so I thank Mr. Ibrutinib but he wasn't very kind getting me there

Catnap7

[Givemestrength23]

Hi how have you faired, I’m on the same medication Ventoclax and ibrutinib. How have things gone for you

[Skyshark in reply to Givemestrength23]

GreyB hasn't posted on here for 2 years.

V+I wasn't approved in UK for NHS use until end of May 2023 (this year). As GreyB's location is UK he must have been on a trial or possibly compassionate use.