Long-term effects of ibrutinib on blood pressu... - CLL Support

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Long-term effects of ibrutinib on blood pressure in patients with CLL

Jm954 profile image
Jm954Administrator
41 Replies

It seems that the hypertension ( HTN) seen by patients being treated with Ibrutinib continues to rise year on year with treatment.

At 5 years 74% of patients experienced an increase in Systolic Blood Pressure of ≥10 which is a huge number of patients. This hypertension is also often difficult to control well.

New HTN on ibrutinib was not associated with: tobacco use, obesity, chronic kidney disease or obstructive sleep apnea (p > 0.05).

"New HTN in patients on prolonged ibrutinib treatment is persistent, linear and independent of other risk factors. The increase in BP remained despite initiation of anti-HTN therapy. Additional studies are ongoing to define cardiovascular and renal complications associated with HTN in these patients"

A bit more here: meetinglibrary.asco.org/rec...

Jackie

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Jm954
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41 Replies
annmcgowan profile image
annmcgowan

Hi Jackie this is very interesting. Do you think this may prove grounds to move people on ibrutinib to acalabrutinib?Ann

Jm954 profile image
Jm954Administrator in reply to annmcgowan

I would certainly like to if I had the opportunity but I can't see a mechanism to do it in the NHS, especially for those of us in trials where the Ibrutinib is paid for. :(

annmcgowan profile image
annmcgowan in reply to Jm954

Maybe in the future.Ann

mrsjsmith profile image
mrsjsmith in reply to annmcgowan

Ann,

I asked my Consultant that question after my BP suddenly went off the scale ( lucky to avoid a trip to A&E and now on medication ) he said if I was to switch it would be Venetoclax. I might keep asking, especially as I understand it’s a similar price.

Colette

annmcgowan profile image
annmcgowan in reply to mrsjsmith

Sorry to hear about your BP rising. Had you been on ibrutinib long?Ann

mrsjsmith profile image
mrsjsmith in reply to annmcgowan

About three years. But that and lockdown saw it creep up gradually. Would prefer not to be on meds, but on a very low dose.

Colette

annmcgowan profile image
annmcgowan in reply to mrsjsmith

Sorry to hear that. Do you mean a low dose of BP meds or CLL meds?Ann

mrsjsmith profile image
mrsjsmith in reply to annmcgowan

Ann,Low BP meds. I am on 5mg of Amlodipine and blood pressure is now perfect 🤞

annmcgowan profile image
annmcgowan in reply to mrsjsmith

That’s good to hear. Hope whatever treatment you get next goes well for you.Ann

mrsjsmith profile image
mrsjsmith in reply to annmcgowan

Thank you Ann,

I am happy with Ibrutinib, but always interested in what might be plan B !

Colette

annmcgowan profile image
annmcgowan in reply to mrsjsmith

I know what you mean. So far so good for me 3 years in 🤞. We all need to keep up to date with what next questions as the treatments are moving fast.Take care

Ann

mrsjsmith profile image
mrsjsmith in reply to annmcgowan

Agreed,And the first time I spoke to my new consultant I had my list ready, trying to sound knowledgeable, hopefully.

Colette 🤔

annmcgowan profile image
annmcgowan in reply to mrsjsmith

That’s the way Collette. I am sure you impressed. 😊

Psmithuk profile image
Psmithuk

Worrying, but it’s good it’s being researched.

JigFettler profile image
JigFettlerVolunteer

I'd be interested to see the full paper and all the numbers, as well as the methods. Can't seem to be able to locate it. BP is such a fickle entity. But v important. Jig

cllady01 profile image
cllady01Former Volunteer in reply to JigFettler

Is this what you want to read Jig?

ncbi.nlm.nih.gov/pmc/articl...

JigFettler profile image
JigFettlerVolunteer in reply to cllady01

Thank you. I'll review it on the PC rather than my phone. Jig.

Benlewis profile image
Benlewis

Given that acalabrutinib appears to be as effective as Ibrutinib, with fewer side effects and at about the same cost, why is Ibrutinib still prescribed more often? What am I missing?

Jm954 profile image
Jm954Administrator in reply to Benlewis

I think that will change, certainly in the UK due to a price difference as well as the patient benefits. Acalabrutinib has only just been approved in the UK by NICE

BluMts profile image
BluMts in reply to Jm954

Jackie, are you saying Acalabrutinib is cheaper than IB?

Jm954 profile image
Jm954Administrator in reply to BluMts

In U.K. it is offered to the NHS slightly cheaper than Ibrutinib

BluMts profile image
BluMts in reply to Jm954

Thanks Jackie.

809123 profile image
809123 in reply to Benlewis

I think it’s so they have a number of treatments available. Try Ibrutinib first, if that creates issues move to another treatment. I am on Ibrutinib and after 6 months have zero side effects. I’m watching my BP though, I noticed the odd high reading lately.

bennevisplace profile image
bennevisplace in reply to Benlewis

It's often the case that the first-in-class hogs the market for longer than objectively it deserves. Ibrutinib sales last year topped $8 billion and will probably continue to rise for some while. Acalabrutinib has a lot of catching up to do.

Jm954 profile image
Jm954Administrator in reply to bennevisplace

From reports of trials Zanubrutinib will be looking for market share too. It looks good.

Sushibruno profile image
Sushibruno

Very disappointing.

CLLerinOz profile image
CLLerinOzAdministratorVolunteer

Thanks, Jackie

Hopefully, data like this will drive change so that the newer BTKi meds will become more accessible.

I’ve added this to the ASCO/EHA 2021 post.

bennevisplace profile image
bennevisplace

Thanks Jackie, very enlightening.

For anyone interested, this article reviews the mechanisms underlying adverse effects of BTK inhibitors. A long read. frontiersin.org/articles/10...

guzzifan profile image
guzzifan in reply to bennevisplace

Thanks bennevisplace, looks like a really good article. I have printed it out for when I have a fortnight to digest it!

Jacksc06 profile image
Jacksc06

Hi Jackie. I am currently being monitored for HTN with a view to being offered medication.

mrsjsmith profile image
mrsjsmith in reply to Jacksc06

Jacks it’s a growing club that I recently joined.

Colette x

Bluepup60 profile image
Bluepup60

Yes, interesting! I was on Ibrutinib for 6 yrs. before I became resistant to it. During the last couple years, I had pvc's and my blood pressure started going up and down. After starting on the ARQ trial, another BTK inhibitor, the pvc's and blood pressure have gradually settled down. On another note, some gut issues have faded also.

MsChief profile image
MsChief in reply to Bluepup60

What is the ARQ trial? What is your current status? What treatment are you taking now? Thank you. MsChief

AussieNeil profile image
AussieNeilAdministrator in reply to MsChief

ARQ-531 is a non-covalent BTK inhibitor. We have a few members on the trial:

ash-2019-dr-deborah-stephen...

studebaker profile image
studebaker

Interesting article Jackie.

Exactly for that reason I was taking Acalabrutinib on compassionate basis, not in a trial. I was doing really well for 8 months and then I ended up with AF and crazy high BP, which took some doing to get under control by my cardiologist. I also ended with heart failure, unfortunately. Difficulty is, not knowing who will end up with these kinds of side effects and who will be sailing through treatment with no problems. I think it happens less often with Acalabrutinib, but the possibility is still there unfortunately. The time will show.

I wish, I could have stayed on it as there were very few side effects only, at the beginning, and I found it easy to take.

I am on Venetoclax now, starting Rituximab in two weeks. My BP is finally under control and my heart failure is monitored by my cardiologist and Heart Function Unit at the hospital.

I am not trying to scare anybody as I believe it is a very good drug and it has much less cardio side effects than Ibrutinib.

Stay safe

Dana

uptheirons profile image
uptheirons

I’m finding all these post interesting if not a little scary. I’ve just finished all my pre treatment tests and should be starting in 2 weeks. My hospital has said I’ll be on one of the following three courses

1: Ibrutinib

2: Venetoclax & Ibrutinib

3: Venetoclax & Obinutuzumab

Jm954 profile image
Jm954Administrator in reply to uptheirons

All good treatments, is it a clinical trial? 😊

uptheirons profile image
uptheirons in reply to Jm954

Yes Jm954, a clinical trial. I have a symptom that has been accredited to my CLL that I haven’t read or seen on here yet. Both my thighs go numb which gradually eases to a touch of pins & needles type sensation. My left heal also goes numb. I’ve had tests carried out by 2 neologists who have put it down to the CLL.

Jm954 profile image
Jm954Administrator in reply to uptheirons

gosh, fascinating, yet another gift from CLL! :(

Phil4-13 profile image
Phil4-13

Thank you so much for sharing this report, especially the possible effects on renal function. Sandra 👍

janvog profile image
janvog

Mayo Clinic mentioned CoQ10 as possibly useful to lower blood pressure. I started to take CoQ10 and unpasteurized, unfiltered, raw apple cider vinegar both at the same time, therefore I do not know which of the two or whether both lowered by blood pressure by 5 to 10 points.

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