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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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I 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 ReactionsI 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 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 ReactionHow are you feeling today, @ann7449, after being on Jakafi for a couple of days?
Everything fine so far
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1 ReactionIs Jakafi covered by Medicare? What is the cost for a monthly dosage? Thanks.
Straight Medicare does not pay for Rx. Feds are trying to set caps on some common drugs like insulin, but a drug like Jakafi for orphan diseases like ours won't make it on that list.
You can buy advantage plans during open enrollment that may limit your co-pay. You can see if the drug mfctr will float you a lower price due to financial hardship. (Usually these last for just a year.) Or you may have been given a Medicare plan with drug coverage from your employer as a benefit when you retired that covers meds. Some seniors here in Michigan get their drugs cheaper from Canadian pharmacies.
Most Medicare drug plans do have "tiers" of meds in their formularies that are covered at certain rates. The formulary changes frequently. Call your Medicare plan to see what it pays.
If you are a low-income senior, your best bet is to ask for generics. And to consider writing your elected officials about those 20-year patents that drug makers are given during which they can charge prices for new drugs that put them out of reach for many of us.
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1 ReactionHi Larry,
Glad you are doing well on Jakafi. I was on it from 12/22-8/23 in combination with Vidaza injections 5 days every 28 days. Unfortunately because of mutations it didn’t work for me. I have read many very favorable outcomes for many people and I hope you will be like that.
Thanks for this info.
Has anyone one been on Jakifi for more then 3 years.