Ruxolitinib and Itching: What Users Say

• phy...
• Taken for 2 to 5 years
• June 19, 2015

Ruxolitinib for Polycythemia Vera "This is the third Rx I've had over 10 years to treat polycythemia rubra vera. 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 my life back!"

• ann...
• Taken for 6 months to 1 year
• November 9, 2021

Ruxolitinib for Polycythemia Vera "I have been on Jakafi for 10 months for Polycythemia Vera. It has reduced my itching, bone and joint pain, fatigue, and my counts are actually normal for the first time in decades! I have gained about 5 lbs on it, but no other significant side effects. I am taking a very low amount (5 mg 2x day), and maybe that's why I haven't gained a lot of weight. This medication has literally given me my life back."

• Cra...
• Taken for 6 months to 1 year
• December 22, 2018

Ruxolitinib for Polycythemia Vera "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 the med for 6 weeks and resumed. The last straw for me was the aching I experienced in all of my joints. The 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."

• Peg...
• Taken for 6 months to 1 year
• October 6, 2018

Ruxolitinib for Polycythemia Vera "I have been taking this medication, Jakafi, for 10 months. Once the correct dosage was figured out, I have experienced no itching, and there has been no need for phlebotomy treatments. The 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."

• zoe...
• Taken for 6 months to 1 year
• May 26, 2023

Ruxolitinib for Graft Versus Host Disease "So far, it seems to be working. If I forget to take it, I get a definite onset of itchy skin with a very marked response and regular and multiple bowel movements in the mornings. I am not sure if it is Jakafi related, but I had a stroke. I have found that my blood levels definitely stabilized and GvHD skin flares reduced quickly too. I do have regular and severe cramps in the calf in the mornings."

• End...
• November 26, 2018

For Polycythemia Vera "I am 83 years old with Polycythemia 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-lived results. Then I was put on Hydroxyurea for 2-3 years, with poor overall results, hypogonadism, hypocortisolism, and hyponatremia, which required substitution hormonal therapy and, finally, painful skin ulcers due to angiitis. For the last 2+ years, I have been on Jakavi, around 30 mg/day: the itching 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 kg. My hormonal problems reappeared with hyponatremia, hypocortisolism, and hypogonadism, so I restarted hormonal treatment. Doctors should be aware of its side effects and know how to diagnose and treat them."