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Has anyone had experience with Jakafi?

Posted by papa6275 @papa6275, Aug 5, 2023

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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deb913 | @deb913 | Apr 1 2:18pm
In reply to @acmuceus "I’ve had Polycythemia Vera for 14 yrs, then RBC went up, I was prescribed taking 1000mg..." + (show)
@acmuceus

I’ve had Polycythemia Vera for 14 yrs, then RBC went up, I was prescribed taking 1000mg of Hydroxyurea extra per week . I take 1000mg/day. Then everything fell to dangerously low counts . I went off the HU and waited 2 months for WBC to come up to the high end of normal. A new Dr has started me on Jakafi. 20mg twice a day for a month, then check blood levels. Has anyone taken Jakafi? How did it go?

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Hi - I took jakifi for 10 months before my stem cell transplant for chronic eosinophilic leukemia. It worked great and I had no side effects or problems with my blood counts. The only reason I came off and did the transplant is because it tends to only work for a year or so for CEL and my doctors recommended doing the transplant sooner than later. Good luck.

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1 reply
acmuceus | @acmuceus | Apr 1 4:57pm
In reply to @deb913 "Hi - I took jakifi for 10 months before my stem cell transplant for chronic eosinophilic..." + (show)
@deb913

Hi - I took jakifi for 10 months before my stem cell transplant for chronic eosinophilic leukemia. It worked great and I had no side effects or problems with my blood counts. The only reason I came off and did the transplant is because it tends to only work for a year or so for CEL and my doctors recommended doing the transplant sooner than later. Good luck.

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Oh thank you for your information, i’m hoping i don’t get much of a reaction either. Hope your transplant is successful, i know that is difficult. Best of luck.

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robinll | @robinll | Apr 2 12:48am
In reply to @acmuceus "I’ve had Polycythemia Vera for 14 yrs, then RBC went up, I was prescribed taking 1000mg..." + (show)
@acmuceus

I’ve had Polycythemia Vera for 14 yrs, then RBC went up, I was prescribed taking 1000mg of Hydroxyurea extra per week . I take 1000mg/day. Then everything fell to dangerously low counts . I went off the HU and waited 2 months for WBC to come up to the high end of normal. A new Dr has started me on Jakafi. 20mg twice a day for a month, then check blood levels. Has anyone taken Jakafi? How did it go?

Jump to this post

After taking Hydrox. (500mg) for 2.5 years for PV, my PLT levels weren't coming down enough so my new Hematologist prescribed Jakafi instead. My PLTs shot way up so back to only Hydrox. but up to 1000mg a day. No bad side effects with either. Some drugs work for some, others not so much.

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1 reply
acmuceus | @acmuceus | Apr 2 12:14pm
In reply to @robinll "After taking Hydrox. (500mg) for 2.5 years for PV, my PLT levels weren't coming down enough..." + (show)
@robinll

After taking Hydrox. (500mg) for 2.5 years for PV, my PLT levels weren't coming down enough so my new Hematologist prescribed Jakafi instead. My PLTs shot way up so back to only Hydrox. but up to 1000mg a day. No bad side effects with either. Some drugs work for some, others not so much.

Jump to this post

good to hear

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drbart86 | @drbart86 | Apr 3 12:03pm
In reply to @acmuceus "I’ve had Polycythemia Vera for 14 yrs, then RBC went up, I was prescribed taking 1000mg..." + (show)
@acmuceus

I’ve had Polycythemia Vera for 14 yrs, then RBC went up, I was prescribed taking 1000mg of Hydroxyurea extra per week . I take 1000mg/day. Then everything fell to dangerously low counts . I went off the HU and waited 2 months for WBC to come up to the high end of normal. A new Dr has started me on Jakafi. 20mg twice a day for a month, then check blood levels. Has anyone taken Jakafi? How did it go?

Jump to this post

I was on HU for several years slowly upping dose. Then became in tolerant and all values crashed (lost >30lb in a month). Switched to Jakafi 10 mg 2x/day. I have ET, platelets still run above normal, all other are now in range. I've never had any issues with Jakafi and been on it 2+ years

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