Imbruvica and fatigue: I've been on imbruvica... - CLL Support

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Imbruvica and fatigue

Jamstev71 profile image
4 Replies

I've been on imbruvica for over three years. For the past year I have a lot of fatigue especially by late afternoon. I do pretty good in the morning but if I do much by late afternoon I'm very fatigued and sometimes have to lay down. Last week I went to the beach and was on the beach four hours and then went to the pool for two hours and the next day I had to stay in my room and rest. Does fatigue hit hard with imbruvica. It seems like it's worse than when I started on imbruvica.

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Jamstev71 profile image
Jamstev71
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TimHB profile image
TimHB

I've been on ibrutinib 18 months and I get fatigued in the afternoons. If I don't take a 30 minute nap around 3 or 4:00, I'm woozy and spacey all evening. And like you, I can easily overdo it and suffer the next day. But I consider this a huge improvement over the fatigue I had prior to treatment - that was a debilitating narcolepsy-like fatigue that would strike without warning and knock me out for about 40+ minutes. Could hit me at my office, in a meeting, in a restaurant, at the gym, even while driving when I'd have to quickly pull over to the side of the road and sleep in my car. I once had to be carried off an airplane because I couldn't get up and walk. That was unmanageable and extremely disruptive so now I don't mind scheduling a little nap for myself when it's convenient.

BeckyLUSA profile image
BeckyLUSA in reply to TimHB

Don’t you just love fatigue???? So many things can cause it! Vitamin and mineral deficiencies, lack of sleep, anxiety, overwork, lack of exercise, too much exercise, other illnesses, and even the CLL itself. You name it and it can cause fatigue.

Fatigue is listed as a possible side effect of Ibrutinib;

however every other possible cause would have to be ruled out to say for certain it was caused by the Ibrutinib. After being tested for all sorts of things, I still can not determine the cause of my ongoing fatigue. Don’t know if I will ever find out. But I am fatigued by trying to find the true reason!

BeckyL USA

narl profile image
narl in reply to TimHB

The IB makes you very tired. I have been on at six months I feel 0% better from when I started it I am down to two pills a day because of the fatigue and I’m going to asked to go to one. My neighbor also has CLL and he can’t stand how he just sleeps all the time he is now in one pill and doing better. I would really just like to get off of it for a little while and see if I do feel better. In February when I started my doctor told me how great I was going to feel but so far I have not

dooner6 profile image
dooner6 in reply to narl

I find the same problem w/ the fatique - down to just 2 pills but still need my nap by 3pm..

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