1. < Blood Cancers & Disorders

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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drbart86 | @drbart86 | 6 days ago
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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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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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.

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good to hear

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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.

REPLY
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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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?

Jump to this post

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
alive | @alive | Apr 1 5:04am
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 have been on Jakafi for several years now. My hemoglobin dropped when I started the drug, but it wasn’t dangerously low. I stayed on it and my bloodwork stabilized over time. Jakafi does a great job controlling my GVHD. My doctor is now slowly decreasing the amount I take.

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acmuceus | @acmuceus | Mar 31 11:06am

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?

REPLY
4 replies
drbart86 | @drbart86 | Feb 24 10:19am

I moved to Jakafi 2 years ago after becoming intolerant to hydroxyurea after about 5 years (for treating ET). Have no real issues. My platelets are still higher than normal, but it holds them mostly steady. It has not stemmed the progression of the symptoms, but mostly living well with the "new norm" OK.

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jerrlin | @jerrlin | Dec 31, 2024

10 mg twice a day. Thx, I’ll ask around. Itching was a real problem and it took care of that

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Mentor
Lori, Volunteer Mentor | @loribmt | Dec 31, 2024
In reply to @jerrlin "I’m on my second month of Jakafi. I’ve had no side effects and so far my..." + (show)
@jerrlin

I’m on my second month of Jakafi. I’ve had no side effects and so far my blood counts are good. I have Polycythemia Vera with Jak 2. I have noticed some weight gain. Has anyone else noticed that?

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Hi @jerrlin. While you’re waiting for others on Jakafi to respond, I read through the information for Jakafi and it looks as though weight gain can be a common side effect of the medication.

I also did a quick search by typing Weight gain with Jakafi in the top search bar and had several replies pop up regarding weight gain. You might want to read through some of the comments and tag the members if you’d like.

But the good news, it’s working for you and with no side effects! That’s excellent. What is your daily dosage?

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