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User Reviews for Jakafi to treat Polycythemia Vera

The following information is NOT intended to endorse any particular medication. While these reviews might be helpful, they are not a substitute for the expertise, knowledge and judgement of healthcare practitioners.

Jakafi Rating Summary

User Ratings
10
33% (4)
9
8% (1)
8
17% (2)
7
8% (1)
6
0% (0)
5
8% (1)
4
0% (0)
3
0% (0)
2
8% (1)
1
17% (2)
6.8/10 Average Rating
12 ratings from 12 user reviews

Compare all 3 medications used in the treatment of Polycythemia Vera.

Reviews for Jakafi

Karen · Taken for 2 to 5 years February 13, 2020

“It’s either have to get a phlebotomy every month and become anemic or take Jakafi and be fat!”

5 / 10
Cheri · Taken for 1 to 2 years September 18, 2019

“A lot of people have experienced weight gain on Jakafi and I have too. For me, I only lost weight on this med by eating low carb with some form of moderate exercise when able. I also found I slept better and generally felt better on a low carb diet while taking Jakafi. Hope this helps someone else struggling with weight gain after starting this”

10 / 10
Vanity · Taken for 2 to 5 years July 12, 2019

“I just don't understand, I've been on this med about 2 yrs and my Dr just increased my dose to 20 mg b.i.d. My platelet count is still thru the roof ! I changed my diet and swallowing these pills just as directed! All I get is bad reports and disappointing agitated comments from my Dr ! I give up !”

1 / 10
Kelly · Taken for 1 to 2 years April 27, 2019

“It works, feel fine!”

10 / 10
Cranny · Taken for 6 months to 1 year December 22, 2018

“Took Jakafi for approximately 10 months. My itching was completely cleared up. During this entire time my bowel movements were intense. I had cramping in my stomach most mornings. Initially my dosage had to be adjusted because all of my blood levels were very low. I had developed cytopenia. Was taken off Med for 6 weeks and resumed. The last straw for me was the aching I experienced in all of my joints. Medication states a side effect can be arthralgia. Well, I got it. Had to get cortisone injections in both thumb joints, both knees, right hip and shoulder. I refuse to go back on this medication. Wish anyone able to take this Med good luck”

7 / 10
Peggs · Taken for 6 months to 1 year October 6, 2018

“I have been taking this medication, Jakafi for 10 months. Once correct dosage was figured out, I have experienced no itching and there has been no need for phlebotomy treatments. Downside to taking this medication is that for days at a time I have trouble with my bowel movements and pain and cramping in my stomach. This happens when I eat healthy, broccoli, kale, multi grain bread. Also when I eat fried foods.”

8 / 10
Sharon Anne · Taken for 1 to 6 months August 8, 2018

“I started on a higher dose and my counts came down and itching stopped, but I had weight gain! Yuck!, migraines, loud constant ringing ears, joint aches and swelling, dizziness. Then, tried a lower dose 5mg 2 x day, and side effects lessened greatly, but my counts increased. I’m off of it and on Hydrea, and trying to lose the weight now (10lbs). To add, the price of Jakafi, ruxolitinib is RIDICULOUS.”

2 / 10
Kaude November 24, 2017

“I am 74 yrs old and have polycythemia vera (PV) since I was 62. Was on Hydrea and phlobotomy every 3 mos. Was seriously very depressed and low energies. On Jakavi since May-2016 and no more phlobotomy. Now taking Jakavi 25mg twice a day. My life is back and feels like not having PV. Med is expensive at 25mg because I need 20+5 mg. Cost is doubled because they don't make 25mg pills!”

10 / 10
emma goldman October 18, 2017

“I was diagnosed with polycythmia vera in 2007. Itching, terrible itching, has been my main complaint and hydroxyurea didn't help. I was taking Atarax four+ times a day plus getting light therapy 2-3 times a week. With Jakafi, I take Atarax 1-4 x day, and don't need light therapy. However, when it's really warm or allergens are in the air, I take Emend off-label. Side effects of Jakafi: more susceptible to infection, possibly anemia, possibly higher erythropoietin levels.”

8 / 10
Rob15 August 23, 2017

“Been taking Jakafi for 9 months .... 10mg 2x daily. Just now counts slightly increasing so my Dr is adding another 5mg daily to my dose. This med has improved my life significantly .... my over functioning has improved 100% but still with some issues. It's scary to change medications, I hope my comment will give others courage and hope ... if their Dr thinks it's worth giving it a try.”

10 / 10
autobodyladybenz January 15, 2017

“I have been on Jakafi now for 7 months. I have had major weight gain (25lbs) and migraine headaches every day. Before I started my counts were over a million and they are only down to 800,000. So for me this isn't working. The side effects and losing days to headaches are not worth taking it.”

1 / 10
phyrchief · Taken for 2 to 5 years June 19, 2015

“This is the third Rx I've had over 10 years to treat polycythemia rubes very. Started for drug trial for 87 weeks. Now on an Rx. I've had 0 Phlebotomy since on Jakafi. Itching is nearly nonexistent. I can sleep well. Mood has improved. Generally, Jakafi has given me a life back!”

9 / 10

Learn more about Polycythemia Vera

IBM Watson Micromedex

Mayo Clinic Reference

ICD-10 CM Clinical Codes (External)