Falling hemoglobin: I have been on imbruvica for... - CLL Support

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Falling hemoglobin

Jamstev71 profile image
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I have been on imbruvica for over two years. The only side effect I had for awhile was bruising. My biggest side effect now is fatigue and last month my hemoglobin fell from 12.8 to 11.3. The nurse seem to think it was from imbruvica. I'm hoping next time I have a CBC, in two months my hemoglobin will be back up around 12-13. Thank you

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Jamstev71 profile image
Jamstev71
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annmcgowan profile image
annmcgowan

Hi sorry to hear that. I will keep my fingers crossed for 🤞 you.

Ann

cajunjeff profile image
cajunjeff

I get confused with ibrutinib side effects. While anemia is a reported side effect of ibrutinib, one of the touted benefits of ibrutinib is that it helps raise hemoglobin. It sure has had a positive effect on my hemoglobin. It seems contradictory that ibrutinib can improve hemoglobin on the one hand and cause anemia on the other.

It might improve on its own, as you say. Ask your nurse about taking folic acid. When my hemoglobin was low my doctor prescribed folic acid for me to help boost my numbers. You can get folic acid over the counter, but I would check with my nurse or doctor before taking it on my own. jeff

Motoli profile image
Motoli

Hace your blood iron checked; sideremia, ferretin, etc.

You will probably need iron supplementation. An excellent source is beef. My wife increased her Hb from 10.3 to 11.9 by eating beef almost every day, and taking an iron supplement. It took her one month to get this increase.

It seems unlikely to me that your low Hb numbers are due to ibrutinib. I would expect ibrutinib to increase Hb, as opposed to decrease it.

Good luck.

PaulaS profile image
PaulaSVolunteer

When I started on Ibrutinib, my haemoglobin dropped dramatically (to 86). Doesn't happen to everyone but it did with me.

At last, 18 months later, my Hb has crept up into "normal" range. (It's 116). I'm now feeling a lot better, but my pre CLL Hb was around 145.

I hope your levels will soon pick up, Jamstev.

Jamstev71 profile image
Jamstev71 in reply toPaulaS

Mine went up for a long time. I've been on it for over two years and now it's starting to drop. I guess it can do strange things.

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