Imbrutinib and High Blood Pressure

[Zappymom12]

My husband has CLL/SLL with 11q deletion. He’s been on Imbrutinib for about three years. He’s suddenly developed high blood pressure that is hard to control. He’s on the highest blood pressure medication. He seeing a cardiologist tomorrow. Has anyone had this experience? I’m very worried.

[Davidcara]

Yep, I have experienced this. Before ibrutinib my systolic BP ran 110, after ibrutinib 170. Currently my BP while on ibrutinib is controlled with three different BP meds, systolic around 135. Every case is different but, there is thought of less side effects using multiple agents at lower doses compared to using fewer medications at higher doses

[Zappymom12 in reply to Davidcara]

We are calling his Oncologist tomorrow as well. His BP was so high the doctor gave him nitroglycerin. We’ve made it through the weekend keeping under control but, still higher than it should be. I’ve read Imbrutinib can cause Afib and other heart problems.

[AussieNeil Partner Administrator in reply to Zappymom12]

All the BTKi drugs do come with the cardiovascular risks of increased blood pressure and atrial fibrillation. Unfortunately, unlike other side effects, which reduce over time, these CV risks tend to increase over time. The later BTKi drugs look to have about half the risk or even better than ibrutinib, though it will obviously take time to ascertain the long term risks. See: healthunlocked.com/cllsuppo...

Ask his oncologist if it is possible for your husband to switch to another BTK drug, such as acalabrutinib or zanubritinib. The former is approved for CLL and the latter for MCL, so can be prescribed off label for CLL in the USA. Others BTKi drugs are as yet only available via clinical trials.

Neil

[Zappymom12 in reply to AussieNeil]

If damage was done to his heart, will discontinuing Imbrutinib heal the heart?

[AussieNeil Partner Administrator in reply to Zappymom12]

Some members who have been through this have reported an improvement when switching treatment.

[KMac1969]

Had the same experience. After about 18 months, my BP just shot up. I am on multiple medications to control it, which was difficult. It remained high so, after 28 months, I was taken off Imbruvica. I had a break from meds for about 3 months. BP came down and now I am on Acalabrutinib. So far so good.

[Zappymom12 in reply to KMac1969]

How long have you’ve been on Acalabrutinib? I’m glad for you! It gives me hope! ❤️

[KMac1969 in reply to Zappymom12]

Since January of this year.

[cajunjeff]

I switched from ibrutinib to acalabrutinib primarily because of blood pressure issues. My BP has improved considerably since the switch.

[Jacksc06]

I have been on Ibrutinib for around the same time. Recently my blood pressure has started to rise, which my medical team are monitoring. Best wishes.

[Zappymom12 in reply to Jacksc06]

Best regards. May you find a healthy solution for your high blood pressures.

[Jacksc06 in reply to Zappymom12]

Thank you.

[BluMts]

Hi Zappymom12, I was in Ibrutinib for over 3 years. Your profile does not say what country you are in. I'm guessing USA from your husband's understanding of how he got CLL. IF so, is Acalabrutinib an option , I'd have thought it might well be. Acalabrutinib carries much much less risk of raising blood pressure than IB does. Also less risk of Afib. My blood pressure rose in the evenings after my dose of IB. This has not happened now I on Acalabrutinib. I had Afib develop after 10 months on IB. I've not had it for 6 months on Acalabrutinib. I can't say it won't occur again while on Acalabrutinib as my Afib was intermittent. But here's hoping it dissapeared.

Another thing .. your husband needs to find out if his Dose of IB is too high for him as his posts describe so many side effects. But as he's a relapsed patient it may not be suitable to reduce his dose. Mine was reduced with no subsequent change in bloods compared to full dose. But IB was my first treatment, I am female and very very slim, and IB worked very quickly to normalise my blood tests results and this and other things need to be carefully dealt with, only by a CLL specialist.

[Zappymom12 in reply to BluMts]

Thank you for your kind reply. Yes, we reside in Texas. Our son is in the UK.

[janvog]

I am on IMBRUVICA since 3 years for CLL . My age is now 87. My systolic blood pressure had been slightly elevated, both before and after IMBRUVIVA. I noticed that MAYO Clinic suggests CoQ10 as a supplements to lower blood pressure. After I started taking CoQ10 and also "raw-unfiltered, unpasteurized apple cider vinegar", which also may (may) lower blood pressure, my diastolic blood pressure remains daily 7 points lower, the diastolic (which had always been normal) remained unchanged in normal range. My hematologist approved the CoQ10 and the vinegar. I check my bp twice daily: In the morning after getting up and at night before bed time and I enter both numbers on the month page of a 8x11 calendar: This permits comparison across month' and years. The suggestion for CoQ10 may be beneficial for blood pressure , Parkinson, migraines and heart conditions and is on page 122 of Mayo Clinic : The Integrative Guide to Good Health .

[Zappymom12 in reply to janvog]

Thank you! We will definitely try this! ❤️

[janvog in reply to Zappymom12]

At least the CoQ10 which is recommended by MAYO. The vinegar requires some thought because it is an acid.

[Curling123 in reply to janvog]

How much of the CoQ10 do you take?

[Curling123 in reply to janvog]

What quantity of CoQ10 do you take?

[janvog in reply to Curling123]

One AM, one PM, between meals . Together 250 mg . It is an expensive supplement.

[Zappymom12]

The cardiologist changed his blood pressure meds and added a daily low dose nitroglycerin medication. He gave him a longer acting medication for his myocardial bridge. We have to wait until August 30th for the stress test which will help determine if they need to proceed to a heart Cath to determine a heart blockage. Meanwhile, waiting to hear back from the Oncologist.

[Catnap7]

I was on Ibrutinib and Venetoclax and on the last month of my 2 yr trial my BP shot way way up. My Hematologist took me off and the pulsations and BP went right

back to normal ...surely another Ibrutinib blessing but I still thank God for Ibrutinib !!!

Catnap 7

[Zappymom12 in reply to Catnap7]

I’m thankful as well for three good years.

[dr007]

High blood pressure appears to be one of the more common side effects. For myself prior to Ibrutinib my blood pressure was historically on the lower side of normal, since starting I have had to take a moderate dose of blood pressure medication to stay in a still somewhat elevated, but not too worrisome range.

[Zappymom12]

Thank you all for your responses and encouragement. Finally, saw the Oncologist yesterday. My husband can lower his dose of Imbrutinib after his BP is under control. His new BP meds can take up to three weeks to fully do it’s work. Interesting point made by the cardiologist was a nuclear stress test will only identify a blockage 70% or greater. The echocardiogram showed no problems. There is another test that will show a blockage less than 70%. As far as taking him of Imbrutinib it is out of the question for his CLL/SLL with an 11q deletion and other markets he has. So far, so good. We return in another week or two to follow up with the cardiologist. Again, thank you all for your input and ideas of lowering BP naturally. We already have a strict diet we adhere to but, using supplements is another step we can make.

[AussieNeil Partner Administrator in reply to Zappymom12]

That's encouraging news. Thanks for your update.

Please be extremely careful when considering using supplements to manage blood pressure. You need to take into account how any supplement might interfere with blood pressure, clotting and ibrutinib's effectiveness. Along with the acknowledged variations in dosage, there just isn't the experience gained from clinical trials when using supplements.

This post on Imbruvica (ibrutinib) and drug interactions provides some useful references:

healthunlocked.com/cllsuppo....

To which I'd add the Memorial Sloan Kettering Cancer Center's Integrative Medicine Herbs database: mskcc.org/cancer-care/diagn...

As MSKCC state:- "The United States Food and Drug Administration (FDA) does not evaluate the safety and labeling of dietary supplements before they are sold. Also, the clinical effects of these products are often difficult to predict due to lack of human data. The potencies of herbal supplements are influenced by plants or plant parts used, harvesting and processing methods, and the amounts of active compounds absorbed. We encourage you to discuss any safety concerns with your doctor before using these products."

Neil

[Zappymom12 in reply to AussieNeil]

Thank you Neil. He is back on blood thinners just half the dose of what he was on after the 15 pulmonary embolisms and one DVT six months after FCR in 2016. As pulmonary embolisms can cause high BP as well. Some days he wants to throw the pills away and walk away but, after he calms down he sees how much we need and love him.