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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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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.
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.
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
It’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…
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