Fatigue and imbruvica

[Jamstev71]

I've been on imbruvica for about the last three and a half years. My counts are steady. For example, WBC was 11.1, RBC 3.65, HGB 12.5, platelets 62, and my lymphocytes were 8.9. Some days I feel pretty good. Other days I'm tired I get up about 7 am. I never feel like going out after 5 PM. My friends don't seem to understand. Is it normal to feel this way? Also have cerebral palsy and I do go to the gym and usually get on the treadmill for about 10 minutes and do some light weights. Is it normal have this fatigue every evening? Appreciate any feedback

[Joyefulone]

One of the first symptoms of CLL is being tired. I have been in remission after taking Imbruvica for over three years and I still tire easily. I try and walk at least a mile every day.

I don't know if Imbruvica plays any role in making anyone tired. I had to take prednisone the whole time I was on Imbruvica to counter act the side effects. I don't know if your cerebral palsy would have anything to do with tiredness. Sounds like a question for your medical team. Keep us posted. It is an interesting question.

[cllady01 Former Volunteer]

Fatigue is listed as one of the common side effects of Imbruvica. Some have found that walking/ exercise (not overly strenuous) can help some with the fatigue. Others seem to find no relief, but maybe some lessening over time. But, at 3 years, you most likely won't see the lessening--at least that seems to be the trend in reports. Hopefully is won't get worse.

And I, too, wonder if your Cerebral Palsy or any other meds you may take might add some fatigue?

rxlist.com/imbruvica-side-e...

[dmmck]

I’ve been on Imbruvica for 18 months. The debilitating fatigue I experienced before Imbruvica has lifted. However every afternoon I get somewhat fatigued. I don’t go out or do much either. I do walk and ride my exercise bike every day, but I never seem to accomplish much in the afternoon. I’ve decided I just need to live life at a different pace.

[MrMidnight]

I was told by my haematologist after I had been on zanubrutinib for 2.5 years that my crippling fatigue (I could only walk 300m a day) wouldn't get any better after that long on the drug. But, six months later, I could suddenly walk 5km a day.

I'm still very limited in what I can do but the improvement at a late stage has been remarkable. (It coincided with my blood counts becoming truly normal...)

[Redlion]

It would seem that whilst Ibrutinib is successful in returning blood stats to normal range for many of us the underlying CLL side effects remain to some extent. As we all know the most significant side effect for most of us is fatigue which is often present years before diagnosis and tends to worsen as we approach the time to start treatment. I found that I got a significant bounce after starting Ibrutinib but now that I am over 18 months in the fatigue has gradually returned but not to the same level as before treatment. To try to quantify it I would say that prior to treatment I was functioning at about 20%, a month after starting Ibrutinib that probably went up to about 70% but now it has declined to somewhere in the region of 50%. Unfortunately the vast majority of haematology professionals tend to focus entirely on blood results without taking account of the wider picture.

[BluMts in reply to Redlion]

From my experience Redlion, all you've said is spot on. I was so exhausted just before starting treatment, that it was a huge effort to walk around a block and did me no good. Despite terrible nausea after starting IB, which has improved, and despite feeling tired still, I find that forcing myself to to walk, swim etc. invigorates me and the exhaustion that results feels normal healthy and relaxing.

I'm nearly 3 years into IB treatment and do get so tired at times for no reason but I'm better in mornings. But exercise and not delaying meal times gives me a boost. However, I need to be careful and not exercise when too tired. Oh....... and exercise used in house work and kitchen is never ever invigorating 😊😊😊😊😊

[Hidden]

I’ve accepted the fatigue and schedule a nap from about 3 to 5 each afternoon. I’m retired so have the luxury of being able to nap. Even at that, I am usually asleep by 10 pm

[PaulaS Volunteer in reply to Hidden]

Your schedule sounds like mine, Stephen. By having a nap between about 4 and 6 every afternoon, I can function again in evenings. Unlike you though, I can sometimes (not always) stay alert till gone 1 in the morning.

It's a schedule I wish I didn't need to keep, as it is puts great limits on how I can plan a day. But I've been like this for the last 20 years, and by trial and error have found this is what works best for me.

I've been on Ibrutinib for over 2 years now, and it hasn't made much difference to my fatigue levels. (Well when I was first on Ibrutinib I became much more fatigued, but that has passed now).

Paula

[4Glory]

Hang in there, Jamstev71! Maybe you could nap in the afternoon to have some evening time with friends? I know that fatigue, it stinks! ~Lisa