Jakafi

[Ggrana3192]

It has been two weeks that I am taking one pill a day. My hemoglobin today was an8 and last week was 11 ,has anyone had a drop like this and one week with just one pill? My doctor does not seem concerned because I’m feeling fine. I am rechecking next week and just nervous about it going lower

[Cranston3x]

Hi Ggrana3192,

You didnt mention other counts so I guess they are fine? And you did not mention how much mg you have taken daily. Normally Rux is taken twice daily unless you are taking the Extended version which I have not heard of that being approved yet.

Per your detail, the drop in HGB to 8. is slightly anemic already and if it continues to drop to 7. you might need a transfusion or an EPO shot. Some people will get tired and/or heart palpation in the ears if the HGB drop below 10. and some will still feel fine even though HGB is below 10. Normally HGB drop, RBC and HCT will likely to drop as well but you do not mention those 2 so I cannot say further.

There is dose escalation in early stage of Rux use to help reduce the effect of anemia, a side effect of it. I guess you have just started the use of Jakafi for 2 weeks?

[Ggrana3192 in reply to Cranston3x]

Hi Cranston3x, I’ve been taking one 10mg a day the past two weeks. My wbc is 45, hematocrit 27, plts 985. Yes I do having the heart beating my ears too. Do you think the hemoglobin will rise with time or keep going lower? Thanks for your input I appreciate it.

Grace

[Cranston3x in reply to Ggrana3192]

Hi Grace,

Your HCT seems a tad too low at 27. The heart beating at ears is indicator that you are anemic, and the body is adapting to it. I am not sure why your doc doesnt give 5mg twice a day but 10 mg once a day. The half life of the drug really matters.

If not you can split the pill into 2 and take twice a day, and try to keep it 12h apart. You mentioned your WBC is 4.5 or 45? Or is it RBC? Can you give me the unit of it because we might use different unit. Your PLT is still high at 985. Has it dropped for you since taking it? I could look at it more if you can give more detail, ie. before and after numbers, but that is up to you. Though now I cant say further.

On the instructions and per many pts experience, during the first 1.5-3 months, the side effect of Rux is there, lowest at 1.5 months after taking it, and will slowly going up from there and the time it takes to recover to the baseline is individual based. It must be your doctor or hematologist to have a say and know how he can deal with dosing strategy for this drug. Or you would need to refer to an MPN specialist. But for what I know now, having 1 pill a day is not the “correct “ way of using this, unless there is a reason for it, which I do not know and cannot say anything further.

Anyway, best wishes to you and hope that you will find suitable dose for it

Steve,

[sbs_patient]

I've been on Jakafi for about 15 months now. I started at 10 mg twice a day. Blood numbers came down quickly but so did my HGB; it was 14 before starting Jakafi but in about 2 months it was down to 10. I definitely felt much more tired and had less energy. Fearing anemia, my MPN specialist reduced my dose from 140 mg/wk to 105, then to 70 (10 mg once a day). HGB came back up to 12-13, where it has remained, and the other numbers are still good. I'd keep an eye on it and be prepared to reduce the Jakafi dose if necessary.

[Ggrana3192]

thank you sbspatient for your advice, hope you stay well