ibrutinib side effects and their duration

[Dyba]

just started 3 days ago ibrutinib 140 mg capsules x 3 daily . day 1 no issues. day 2 mild dizziness. day 3 dizziness worse. is this just an introduction of much m ore side effects to come?

[TimHB]

I was on Ibrutinib for 3 years and your question made me look back at my notes of what I reported to my doctor after starting: "dizziness, headache, hot-cold chills/sweats, fatigue, low appetite, shortness of breath". I can tell you that all of those passed quickly as my body adjusted and I did pretty well for the next three years. The worst persistent side effect was bone and joint pain and "hangover"-like mornings. My doctor insisted the pain meant the Ibrutinib was working as it was from my marrow releasing all the bad CLL cells, so I tolerated it and took a lot of Tylenol. I also developed AFib which they attributed to the Ibrutinib so after 3 serious AFib attacks I was switched to Acalabrutinib last year. The bone and joint pain and bad mornings went away and the AFib has improved (but I had other side effects from Acalabrutinib so they took me off that as well.) But we are all different and react differently so my best advice is to keep notes and report everything to your CLL specialist.

[Dyba in reply to TimHB]

Thank you Tim . do you know what you WBC count was when you first started ibrutinib ? What are you taking presently?

[TimHB in reply to Dyba]

WBC was 26 when I started (unmutated, stage II) and it spiked after starting, then steadily dropped. After 4 years of Ibrutinib and 6 months of Acalabrutinib I'm now at 9 which is great. I'm off treatment at the moment while they focus on my heart issues then my CLL specialist is recommending Rituximab and Venetoclax.

[AussieNeil Administrator]

With the exception of high blood pressure, the incidence of side effects with ibrutinib reduces over the years on treatment. Be patient. If side effects become intolerable, other, later generation BTKi drugs have lower side effect profiles. Acalabrutinib and zanubrutinib can be prescribed in the USA (the latter off label for the moment, as zanubrutinib has been approved for Mantle Cell Lymphoma with CLL approval pending). As you are in Canada, you may be able to switch to acalabrutinib, depending on provincial funding, if you find that you can't tolerate ibrutinib.

Neil

[goldstream]

Hi, same age as you and from BC. I started Ibrutinib a year ago. Over the course of the last 12 months I have experienced mild dizziness, pounding heartbeat but no heavy breathing (e.g. when hiking), some ankle swelling, and brittle finger nails. While this may sound like a lot, the impact on my day-to-day health has been negligible. However, as you know, it’s not exactly the same experience for everyone.

[flippingnora1]

I have been on Ibrutinib for 7 months. 420 mg, 1 per day. I was experiencing a 'spaced out' feeling in my head, not well at all, but it took about 3 months to affect me. I have been told to stop them for 6 weeks until I see my oncologist again. I feel so much better now. Then I think they will try me on something else. I

[hhk50]

Check your blood pressure. Ibrutinib can raise the BP which might also induce dizziness. Happened to me.