Imbruvica ibrutinib & ACE inhibitors - CLL Support

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Imbruvica ibrutinib & ACE inhibitors

sphexx profile image
16 Replies

I have just been told to stop my ramipril due to an interaction with ibrutinib having the risk of sudden cardiac death! I have been taking ibrutinib daily for 3/4 years with ramipril most of the time and obviously have not had this reaction so it may be very rare or not apply in my case. I have no other information about this. A quick Google turned up nothing.

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sphexx
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16 Replies
Newdawn profile image
NewdawnAdministrator

Yes I understand patients on Ibrutinib who take Ace Inhibitors (the meds that primarily end in pril) are being contacted but I’d heard it was do with a possible adverse effect on blood pressure. I was contacted this morning but I haven’t been on Ibrutinib for quite some time now.

Doesn’t sound like you’ve been affected by this sphexx. Is your b/p regularly checked?

Newdawn

sphexx profile image
sphexx in reply to Newdawn

Yes I regularly check my BP . But I’ve had wildly varying (high) systolic readings predating ibrutinib though my average stays about the same.

country76 profile image
country76 in reply to sphexx

When I was on Ibrutinib my systolic was in the 180-190's. I do have occasional abnormal heart beats however I always had them which I was told is normal. Of course, when the EKG was done it didn't happen.

country76 profile image
country76 in reply to Newdawn

I wonder if it is true for Alacabrutinib?

Newdawn profile image
NewdawnAdministrator in reply to country76

I think you’d need to ask your Consultant on that one country.

Newdawn

country76 profile image
country76 in reply to Newdawn

Thanks.

Davidcara profile image
Davidcara in reply to Newdawn

Wondering if anyone an official statement or research paper, explaining this decision?

annmcgowan profile image
annmcgowan

Hi I have just received a letter from my haemotologist about this even though I am not on heart medication of any kind. He enclosed a list of medications not suitable to people on ibrutinib. I would speak to your specialist as it seems individuals on ibrutinib may need a change of medication.Ann

zaax profile image
zaax

I had a call from my FLAIR specialist he said i have to come off perindopril, as it's now a no-no with Ibrutinib and I'm now on Candesartan

Davidcara profile image
Davidcara in reply to zaax

Did the mention why you need to come off of it

morepork profile image
morepork

I 'm waiting to see the published paper on this , and % of risk as I am on Ibrutinib AND one of the generic ACE inhibitors (enalapril) ; and have a good control of B/P with minimum dose.Had the whole cardio workup due to my occasional A/fib like slowing of heart rhythm and at the time I went onto my BTK the advice to GP's was not to prescribe Calcium Channel blockers for hypertension. If it's a long shot risk to take both together I'm not bothered.

sphexx profile image
sphexx in reply to morepork

It’s going to be a small risk I expect otherwise it would have shown up earlier given the nature of the claimed effect ie sudden death. That also makes it problematic to weigh the risk, it’s not like you can stop taking the drugs if the effect occurs — well of course you would actually stop taking them 😱. As I wrote earlier, I have no other information (eg published papers), just the notice from my haematologist.

newyork8 profile image
newyork8

See if ARBs...telmisartan, losartan work for you. They are as good as ACE..I've been on for years with Ibrutinib no problem.

Davidcara profile image
Davidcara

Has anyone heard what the interaction might be, and if there is an official reliable statement?

sphexx profile image
sphexx

I’m not sure what you would consider an “official” statement. Perhaps I didn’t make it clear in my OP that for me the instruction came from the Haematology department at the hospital I attend which is “official” enough for me :). I haven’t seen any reference to the work this is based on.My ibrutinib was prescribed by Prof. Peter Hillmen and he is ultimately responsible for the advice I received. “His clinical and research interests include chronic lymphocytic leukemia (CLL) and PNH. He is Chairman of the CLL trials subgroup of the National Cancer Research Institute (NCRI), with the responsibility of developing a portfolio of phase II and III studies in CLL for the UK. Dr. Hillmen is also the Chairman of the International PNH Interest Group. He is principal investigator of several national and international phase II and III trials for CLL and PNH.”

patientpower.info/bio/peter...

sphexx profile image
sphexx in reply to sphexx

It occurs to me, given the source, that it could be from unpublished results :(. Anyway, I definitely do *not* mean to be giving anyone advice! It could be that I fit some particular category at risk! Just a heads up.

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