Can I ask a question regarding Ibrutanib? I'm coming to the end of my first month at 420mg per day. This last week or so I have noticed getting light headed and dizzy with headaches. Today I have started recording my blood pressure which has always been normal. Today it's high (for me) at 158/91 BPM 56.
Could it be Ibrutanib causing this issue?
It certainly could be the ibrutinib Nicebaps. Ibrutinib is known for its cardio toxicity especially in terms of causing or aggravating hypertension in a significant number of patients.
You need to keep a close eye on this and discuss with your specialist especially if you’re experiencing symptoms.
Best wishes,
Newdawn
Up until now my BP has been "Text Book" at around 118/65 with testing Heart Rate of 52-55 do I am a little concerned. I've just come off Venetoclax after 3 years with no real issues apart from not working.
That’s a significant hike then Nicebaps. I’m just off Ibrutinib after 15 months due to severe arthralgia and myalgia (to test out whether it’s implicated and allow me to take anti-inflammatories). I was already on b/p meds prior to starting Ibrutinib but have noticed my b/p is slightly lower since coming off it. Ironically my pulse rate then elevated massively when I came off Ibrutinib and stayed on Venetoclax.
My advice would be to keep a chart of your b/p levels to send or show your doctor but it needs mentioning sooner rather than later.
Regards,
Newdawn
When I was on Ibrutinib my blood pressure increased from always around 128 to over 160 at times. I was put on tablets. However, been off Ibrutinib for over three weeks and it has dropped considerably - today 130/73 so it definitely was the treatment. Good luck on Ibrutinib - it did wonders for me.
See this post from just 17 days ago which addresses your query.
healthunlocked.com/cllsuppo...
Jackie
I would talk to your Dr ASAP,
My husbands blood pressure went up a lot when he was on Ibrutinib. He also was a bit light headed.
Apart from that it did what it said on the tin for a good few years.
I hope you get it sorted soon.
Thank you.
Mine also went up and I wore a monitor for a day but my GP decided that as it was only slightly high and I didn’t have any other co morbidities like diabetes, she decided to leave it. Don’t forget no matter how calm you may feel covid must be adding to most of our stress levels.
Colette
Mine normally is 90s/50s and is stable or lowering. My CLL specialist did tell me weeks ago when I started it to monitor my bp so I have one at home and use each morning. She said rising bp is a side effect that needs monitoring closely. Hope you are able to see/call your doc soon.
Ibrutinib raised my blood pressure (bp) about 15 to 20 points pushing me from borderline needing meds 130/75 to needing bp meds 150/85.
I have been eating better, exercising and losing weight which has helped about 5 or 10 points, but still need bp meds.
The bp meds for me have been easy to take and the trade off, having my Cll controlled with an oral pill a day for having to take bp meds, has been well worth it.
My normal b/p is about 110/60. But on the Ibrutinib, it can go to 148/84. So, my primary doctor started me on a b/p med that I take concurrently with my Ibrutinib and the b/p stays around 112/64. I benefit from both and can stay on the Ibrutinib.
I was never on a b/p med prior to the Ibrutinib
Yes Nicebaps, Ibrutinib will cause your blood pressure to go up. My blood pressure went up because of Ibrutinib. Average 160/85.
My doctor just increased the dosage of my medication. Now I am back to normal 125/72 this morning.
Definitely keep an eye on it 👀
Win
Yes, I was already on bp medication, but when I started taking Ibrutinib it slowly started rising and I couldn’t get it to come down.....
So, the doctor had to adjust the bp medication .
Thanks for that. Up until now I've had no problem with my BP hence my concern.
Welcome to the club. I personally believe everyone on Imbruvica eventually will develop BP issues. Unfortunately many patients don’t notice it and don’t report it. I take Amlodopine 10mg daily. I started with lower dose but eventually I needed a higher dose. Now it is under control.
For some contrary reason my B/P has gone down since starting on Ibrutinib
(280 mg), to the point I've been on half the lowest possible dose of an ACE inhibitor and could probably go off those meds completely. We think it's possibly because I lost a lot of weight.
Have you or anyone thought of reducing to two Ibrutinib pills instead of 3. I reduced my dosage by 1/3 about 6 months ago. White count remained normal and side effects of all kinds lowered and less frequent. I have been on it 13 months. BP however goes up more than normal and has spiked up to 198 for systolic a couple of times. And for a few weeks arrhythmia usually lasting 1/2 hour. Small dose of clonazapam worked to stop arrhymia. Stress driven and i guess Ibrutinib is a catalyst. Exercise and careful eating really reduces symptoms like cramps and high BP just passing on my experience. I appreciate hearing everyone else's.
By the way I am 75 years old and still working part time. CLL was at stage 4 three years ago when starting treatment.
I looked up research on lessening the dose and conclusions are that no harmful effects were seen and the blood counts did not worsen. The dose is what they choose for trials. Obviously they prefer to lean to higher rather than lower range to ensure results.
My blood pressure was controlled with meds prior to Ibrutinib, however my blood pressure increased with Ibrutinib. Make sure you tell your doctor, it isn't healthy walking around with high blood pressure.
My concern is taking yet another pill and then discovering that I have to stay on BP tablets for the rest of my life. I've never had a problem with my BP until I started taking Ibrutanib a month ago.
Why the concern about addressing high blood pressure with one or 2 (in our case, 2) versions of BP meds.?
Read the research provided by Jackie. It is very clear.
Hope you address ASAP and reframe your concerns with the help of your CLL doc and primary care doc. Both docs will want you to have normal blood pressure because high blood pressure is very risky. It is not anything to dismiss lightly. Also, it may take a while to sort out the best BP medicine for you and to see the results.
Good luck and let the forum know when it is all sorted out!
~ Yuck
I don't like taking BP pills either however, high blood pressure isn't good. Talk to your doctor maybe he can give you some options.
Just an update. Now started to take Amlodipine (5mg) as my BP was going to high 
4 years on Ibrutinib and now seeing elevated BP
CLL and the NHS in the UK
Ibranib side effects 
VACCINE ANTIBOBY TEST STUDY
