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Has anyone had experience with Jakafi?
I was diagnosed with polycythemia November 23, although it is likely I had it for a significant period prior. I tolerated the hydrea well for three months, then became quite ill as a reaction to the hydrea. After trying to "restart" several times, the same reaction occurred. My oncologist then started me on Jakafi about 10 days ago and, so far, no side effects as I am tolerating the medication well. If all goes well, this is a medication that makes you feel as if you are cured as it controls HCT, WBC, platelets, and iron levels, without phlebotomy. Please advise if you have been on Jakafi and what your experience has been.
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My husband was put in Jakafi several weeks ago to treat GVHD after allogenic stem cell transplant. It has caused a severe drop in his already low platelet count and he is being tapered off of it. Today is his last dose. We hope for a quick recovery of his platelets.
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1 ReactionHi @trarenrut, ultimately your health isn’t in the hands of your hematologist/oncologist. It’s in your hands. You sound concerned about your continually high white blood count and I’m wondering if you have actually been able to talk to your oncologist about your concerns.
WBCs can fluctuate daily as an immune response. Multiple factors can raise WBC for example: Infections, underlying inflammation, stress, smoking, allergies, bacterial or viral infections and certain drugs, etc..
Treatment for high white blood cell counts usually involves addressing the underlying cause rather than phlebotomy. That’s generally used to reduce excess iron or lower blood volume.
What is your actual diagnosis that has you on Jakafi the past few years?
No, not at all. First when it was determined that I had the high white count my basically overall volume of blood was high also red and white. It is about 45 now and before it was 50-51. 10 years ago I had a white count of 18. With phlebotomy and Jakafi It came down to 14 then went 2 years with no phlebotomy. I don't know why but it jumps around. Last week it was at 22. I have never had it that high. I just thought maybe phlebotomy would help. (not that I look forward to it). I appreciate any ideas but ultimately it is in the hands of my oncologist. Thanks
Welcome to Connect, @trarenrut. Typically, phlebotomies are done with patients who have polycythemia vera (PV) and have elevated hematocrit and red blood counts. Because a phlebotomy involves drawing blood, it can lead to a temporary decrease in white blood cell counts due to the removal of blood volume. But it’s not done to lower white blood counts specifically.
Has your red blood count continued to increase?
I have been on Jakafi for several years now. I don't seem to have any side effects nor did I when I was taking hydraurea. We have recently moved from another state and my onocologist here does not have me do phlebotomy's. My white count has increased and he is still not doing them. Does any one do phlebotomy while taking Jakafi? My white count was usually between 14-17 with phlebotomy and now its at 22. never been that high.
Hello PV friend ! I have been on JAKAFI FOR 10 months took 20 milligrams a day! In three months the reduced my number s by 50 percent!! Too much !
Became anemic! Could not climb stairs!! Got bacterial infection! So told doc I was decreasing amount of JAKAFI
HE AGREED! Still on it
Keeps my symptoms from now MF ! Mostly under control!
Very tired ! Low hemoglobin
Have blood work every 6 weeks
Stable ! Nothing else can be done for my MYELOFIBROSIS !
Good luck FRIEND
GODS SPEED FOR IMPROVEMENT!! Anna
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3 ReactionsIt’s almost like a root canal nerve pain? It comes and goes and is so random maybe hurting a few days and then not for a month. It’s def from the HU. I have PV. After they lowered the dose and my body adjusted it’s only once in a while and I tolerate it. Other meds are super expensive and have many more side effects so I just continue on…
I was on Hydrea for two months with no significant change to high platelets and then switched to JAKAVI for two months , tolerated much better than the Hydrea, however I was also on Eliquis for atrial fibrillation so had to be taken off as danger of haemorrhage..back on double dose of Hydrea and have succeeded in getting down the platelets but unfortunately has caused my anaemia to worsen and had dropped to 8.1 mg. Had one unit packed red cells last week, and after the euphoria of feeling great for two days back to having headaches severe tiredness and feeling faint with the most menial tasks. Good luck with the JAKAVI
What is your tooth pain like? I just started with HU 2 months ago and I have noticed some tooth pain my front teeth. I am kind of worried because I think my ET is causing increased gum disease. I am hoping it goes down as my platelets do, but the tooth pain started after the HU.
Try essential amino acids to stop the hair loss. I was losing handfuls of hair with HU, then I started taking amino acids for something else and within two weeks my hair stopped falling out and has grown back (albeit a little fuzzy because chemotherapy messes with hair follicles). I take Doublewood brand Essential Amino Acids. I hope it helps you.