Decrease in Anemia after starting Ibrutinib

[VikPa]

Hi, can the folks who were anemic before starting Ibrutinib advise on the time it took for Hb levels to start rising again?

My mother has started Ibrutinib 40 days back and her Hb is still decreasing and may need a blood transfusion if this continues. will have to make a judgement call to wait for the Covid - 19 situation to resolve or do the transfusion right away. Many thanks. Vik

[Hidden]

mine started improving after about 60 days but only reached what was called normal at 5 months

[PaulaS Volunteer]

Hi Vik,

I’m sorry to hear about your mother’s situation.

When I started Ibrutinib nearly 3 years ago. My Hb dropped and continued to drop for the next 3 or 4 months. Then it slowly started to rise. I never needed a blood transfusion but was getting close to needing one.

I can see the dilemma with your mother.. Not an easy decision at the best of times, and more so with Covid around.

People seem to react in lots of different ways to Ibrutinib. Some don’t have a drop in Hb at all, and some just a slight drop for a short time.

Wishing all the best to your mother.

Paula

[PlanetaryKim]

I was transfusion-dependent before starting ibrutinib, with 95-99 % marrow infiltration by CLL. My specialist predicted that I would no longer need transfusions after first month on ibrutinib, He was right. My Hgb started to rise after 20 days on ibrutinib. It took me 2.5 months on ibrutinib before my Hgb was back in normal range.

Has your mother's doctor investigated possibility of Auto-Immune Hemolytic Anemia (AIHA)? It sometimes accompanies, or develops from, CLL. Ibrutinib would not necessarily correct that. Good luck to your mother!

[SandandWind]

Mine started to turn around within a week but I also was on obinutuzumab.

[Mprm]

When I started Ibrutinib my Hb was somewhat low. In the first three months it decreased, then, around month four it climbed to a low normal range.