Is fatigue always a side effect of long term use of Ibrutinib?

[leopardo]

This post was originally sent as a response to Larington, who last posted 4 years ago! I am new to this support group. But I a now repeating the original response in the hope of eliciting a response from a similar CLL patient.

Don't know where you are in terms of husband and daughter. And ! am very sorry that your family has gone through all of this. I do hope there has been some improvement, some good news! Noticing that almost all of these posts are at least 4 years old. Not good. Am suffering from severe fatigue and dizziness. Getting worse. Apart from the CLL, first diagnosed 17 years ago! ) and what I've just mentioned, I am in relatively good physical condition exercising almost daily, eating not badly and sleeping relatively well. I am 76 years old. Have been on Ibrutinib for the last 5 years and it has brought all significant blood levels into normal or almost normal range. Have tried going-off ibrutinib for a month recently but did it not seem to make much difference in terms of the fatigue. As as the fatigue and and the dizziness are getting worse and worse, I am beginning to wonder if the Ibrutinib is still not the primary cause. Have done additional blood testing as well, have seen a psychiatrist. All negative results, no clinical depression. I am an enigma? Or am I?

Leopardo, Canada

[gardening-girl]

Leopardo, sorry that you have not gotten any responses to your request asking if others have experienced what they consider to be ibrutinib-associated fatigue. I have been on ibrutinib for 3.5 yr and don't associate it with fatigue.

[leopardo in reply to gardening-girl]

Thanks for this. You be well.

[RJR1]

Hello from the USA. I’m nearing 3 years on Imbruvica at age 68 1/2. While I do get tired after strenuous work, ie lawn care, etc I don’t consider it to be extreme fatigue. I do try to take a one hour nap in the late afternoon, but that’s after starting my day at 6:15

[leopardo in reply to RJR1]

Interesting. Thanks for this. You’ll be well.

[larrymarion]

I've been on Ibrutinib for 5+ years and definitely have less energy than before. the problem for the docs and us patients is to try to figure out how much of the fatigue is due to aging (i'm 69), lack of exercise, CLL itself, prior treatments, etc. I sleep 9 hours at night, take naps during the day and still feel tired. had to retire because of the fatigue and other side effects of I plus 11 cycles of chemo before starting the novel agent.

I've resorted to drinking lots of coffee each day, plus 2 anti histimine tablets to give me enough energy for the day as well as control my hay fever and other allergies. I used to be up all night from one cup of coffee in the morning.

[jaysearch]

"Fatigue" is not only a side effect of the Ibrutinib. My main fatigue came from my CLL. My fatigue was explained as a battle of CLL (my low blood counts) vs Ibrutinib, and the battleground was my body. Exhaustion became my middle name. I'm 76, and on Ibrutinib for over 2 years. I now travel, and even sometimes do gardening. Then I rest for a while. Still get very tired on occasions, but a nap usually works. We need to exercise more. Walking (or tread mill). Be well.

[leopardo]

Thank you larrymarion rian and Jaysearch. All of this helps to figure things out. And you’re right, exercise always helps. Problem is when you’re feeling wretched, difficult to to start engines.