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User Reviews for Ruxolitinib to treat Polycythemia Vera

Also known as: Jakafi

Ruxolitinib has an average rating of 6.9 out of 10 from a total of 14 ratings for the treatment of Polycythemia Vera. 64% of users who reviewed this medication reported a positive effect, while 21% reported a negative effect.

Ruxolitinib Rating Summary

6.9/10 average rating

14 ratings from 15 user reviews.

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

10
29%
9
7%
8
29%
7
7%
6
0%
5
7%
4
0%
3
0%
2
7%
1
14%

Reviews for Ruxolitinib

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

Jakafi (ruxolitinib): “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
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phyrchief · Taken for 2 to 5 years June 19, 2015

Jakafi (ruxolitinib): “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
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Sharon Anne · Taken for 1 to 6 months August 8, 2018

Jakafi (ruxolitinib): “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
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Rob15 August 23, 2017

Jakafi (ruxolitinib): “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
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Kaude November 24, 2017

Jakafi (ruxolitinib): “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
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Cranny · Taken for 6 months to 1 year December 22, 2018

Jakafi (ruxolitinib): “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
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Vanity · Taken for 2 to 5 years July 12, 2019

Jakafi (ruxolitinib): “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
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autobodyladybenz January 15, 2017

Jakafi (ruxolitinib): “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
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Peggs · Taken for 6 months to 1 year October 6, 2018

Jakafi (ruxolitinib): “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
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emma goldman October 18, 2017

Jakafi (ruxolitinib): “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
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BaxClem · Taken for 6 months to 1 year March 18, 2021

“I have been on Jakavi for 8 months, 10 mg BID. It has been a life saver after serious side effects from Hydroxyurea. Within 4 months my blood levels were approaching normal, effectively lowering my Hct and platelets. No phlebotomy during this time. Very few side effects except minimal weight gain and periodic fatigue. Not sure if the fatigue is primarily due to the PV. Very satisfied with this medication. Cost could be prohibitive, but thankfully my insurance company covers it due to the failure of the Hydroxyurea.”

8 / 10
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Endochris November 26, 2018

“I am 83 years old with Polycythaemia Vera for more than 15 years. Initially I was treated with phlebotomy every 2-3 months . Sodium chromoglycate was added for the excruciating itching and ultraviolet light treatment , with poor and short living results. Then I was put on Hydroxyurea for 2-3 years, with poor overall results, Hypogonadism, Hypocortisolaemia and Hyponatraemia which required substitution hormonal therapy and, finally, painful skin ulcers due to angeitis. For the last 2 years+ I have been on Jakavi ,around 30 mg/day : the ithching is gone, phlebotomies stopped, blood count under very good control, but my blood pressure is going up and up, my serum cholesterol increased and my body weight went up 10 k g .My hormonal problems reappeared with hyponatraemia, hypocortisolaemia and hypogonadism, so I restarted hormonal treatment. Doctors should be aware of its side effects and know how to diagnose and treat them .”

8 / 10
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Karen · Taken for 2 to 5 years February 13, 2020

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

5 / 10
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Kelly · Taken for 1 to 2 years April 27, 2019

Jakafi (ruxolitinib): “It works, feel fine!”

10 / 10
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Scully · Taken for 6 months to 1 year September 6, 2018

“Has anyone’s weight stayed the same or even lost weight on Jakafi? Please share your review.”

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This 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.

Learn more about Polycythemia Vera

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