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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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How are you feeling today, @ann7449, after being on Jakafi for a couple of days?
I had the same experience with hydroxy after 3 months, tried again after 1 week and problems came right back. I've been on only aspirin for 5 months but started Jakafi yesterday. I'll be praying for you that the Jakifi works well for you and would appreciate your prayers as well.
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1 ReactionI was on hydrea for a short time as I did not tolerate it well and switched to Jakafi 10mg 2x/day a month later (diagnosed PV June ‘22) and increased to 20 mg in Dec. as platelets were still fluctuating too much. It has stabilised bloods and platelets but continued to cause fatigue and irritability. It doesn’t completely eliminate side effects of PV (scrungy toes, feeling of heavy legs but allows you to lead a “normal” life.
Just recently reduced to 15mg 1x20mg & 1x10per day, and continuing “aspirin” as previously; my haematologist is trialling this with me for the next three months….
Hope this info is what you were looking for. Always keep in mind that we are all different and react differently- Be well moving forward.
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1 ReactionI started Jakafi about two weeks ago and so far so good. Medicare now as a plan when you pau 3,300 in the coverage you pay no more for brand name drugs for the remainder of the year. Jakafi was 3,300 a month and now its free for the rest of the year. Save me 36,000 per year. Check it out.
Larry
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2 ReactionsYes same thing here. My husband took it for graph vs host disease and didn’t have any trouble. But very expensive. Hope all continues to go well.
Can I ask you if you suffer from the itching ? I have yet found anything that helps that except antihistamines. I’m on Hydroxyurea with no side affects but it doesn’t do anything for the uncontrollable itching. Thx
I took Jakafi, but for a different reason. I took it for Graft Versus Host Disease following a Bone Marrow Transplant. It worked. I had no problems with it.
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1 ReactionAfter having terrible side effects while taking HU my doctor had me switch to Jakafi. Three years and no problems. It has really helped with PV side effects.
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2 ReactionsMy dr wants to start me on Jackafi, but I can’t afford the large co pay. Have applied to IncytesCare, but no reply yet. And I’m worried about side effects.
Hydroxyurea caused elevated liver enzymes.
Thank you - I already do so, and indeed it assuages the burning. 2x day, early morn and at bedtime.