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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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Hi @jeffmacl and welcome to Connect. You’ve had quite a time with your ET and MF. What has the recovery from the splenectomy been like for you? I can imagine with your Hgb hovering around 8, that has to leave you feeling pretty sluggish and tired all the time. Does your hematologist feel the red cell production might increase over time or is this stable now at 8.0?
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1 ReactionI’m reading this thread looking for side effects, so far, it looks like there are none? I was prescribed the medication after my stem cell transplant, in case I needed it. They wanted to make sure it was approved before having me start, if needed. I have Kaiser (not sure if it mattered, but it was their highest plan coverage available), and it was approved right away, and because my annual deductible and copayments were met (due to transplant costs), it was at no cost to me. My Drs were shocked that I had it in hand the next week and at no cost.
I had no idea of what that really meant, until reading this thread. Now feeling very blessed and thankful. Also, reading that someone lived to be in their 90’s on it for 20 years, eases my concerns.
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2 ReactionsHi @mrsspiker. Let me officially welcome you to Connect, though you’ve been a member for a couple of years but have never replied before. I’m happy to see you’ve joined in the conversation. How long ago did you have your stem cell transplant and did you need the Jakafi afterwards?
We have quite a few members in the forum that have had bone marrow transplants for a variety of medical reasons. Would you like to share your story with us? The perfect place for that would be in this link!
~My bone marrow translant story; Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
I’d love to know more about your transplant. Was this using your own cells or that of a donor? Would you mind sharing what illness had you needing the transplant?
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2 ReactionsYes, I've perused many of the posts. It's truly inspirational to read success stories related to Jakafi. HOWever, the elephant in the room is the ridiculously high cost of the drug. Incyte, the inventor and manufacturer of the drug, is gouging consumers. Not sure what their corporate mission statement is but profiting from patients who find themselves in life-or-death situations, seems indefensible. The term "big pharma" has become ingrained in our culture and frankly leaves a bad taste in my mouth. Just like its counterparts: Big Oil, Big Ag, and Big Tech, Big Pharma holds a monopoly on society and exploits the most vulnerable among us with unchecked economic power and political influence. While I am a capitalist and believe exceptionalism should be rewarded, there are times when profit has replaced consciousness. I've written congressmen/women and encouraged others to do the same. Peace out.