JAKAFI anyone! I've been on it for 5 years

Hello Pamdg
I am very surprised that you were on JAKAFI FOR FIVE YEARS!! I was on it for about nine months and it drove all my blood numbers very low ! Below the minimum!! I myself took a close look at my results and was actually shocked! But that explained how bad I was feeling physically!! I told my doc to cut dose in half! But my numbers kept dropping!! So I went to see another hem/onc specialist who took me off JAKAFFI and insisted I have another BMB
WHICH I DID !! Not good outcome!! Confirmed I had MF
MYELOFIBROSIS!! So my take is ! I should have been more careful and looked at my numbers closer myself!!
So between the illness and JAKAFI I AM IN A CRISIS ! Taking a drug called OJJAARA TO HELP PRODUCE MORE BLOOD CELLS ! Had to decrease the dose ! Now trying to tolerate this low dose !
All of us with these rare blood illnesses have to really pay attention to what is happening to our health !
Good luck to you

I have been on Jakafi for four years. It has been very effective for my skin GVHD. My hemoglobin fell at first, then stabilized and have been normal since. My doctor is decreasing the dosage gradually since my GVHD symptoms have resolved. I am now taking one pill every other day.

@pamdg, you may be interested in these related discussions:
- What's the latest Jakafi (ruxolitinib) for polycythemia vera (PV)? https://connect.mayoclinic.org/discussion/polycemia-vera/

- Anyone had adverse effects from Jakafi (ruxolitinib) for PV?https://connect.mayoclinic.org/discussion/has-anyone-had-adverse-affects-from-jakafi-for-pv/

See all: https://connect.mayoclinic.org/group/blood-cancers-disorders/

@pamdg, might the night sweats be related to something other than Jakafi? Have you mentioned this new development to your hematologist?

@colleenyoung
Yes and he just kind of ignored it. Since it is getting worse I will ask again when I see him next week.