Weight gain and high cholesterol with Jakafi

Posted by nanjp10 @nanjp10, Jan 26 1:34pm

Jakafi has really helped with the itchy skin symptom of PV I suffered with, but I've noticed my weight steadily increasing to where I'm the heaviest I've ever been. My cholesterol is also fairly high.
I started with hydroxyurea a year ago when I was diagnosed, then switched to Jakafi after 6 months since the symptoms didn't go away. I am currently on hydroxyurea 500 mg 5 days/wk and Jakafi 15 mg 2x daily since my platelets still aren't under complete control.
I've read weight gain and high cholesterol can be side effects from Jakafi. I'm focusing now on making sure I get plenty of exercise and am eating as healthy as I can with a few splurges. I also try to practice gratitude, positivity and kindness, and spend more time with friends and community. I'm hoping the weight doesn't keep going up even while doing what I can.
I still enjoy a glass or two of wine in the evenings, but feel I might need to give that up.
I would love to hear from others on any similarities and how you manage them. This is a wonderful outlet of support. Thanks!

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alive | @alive | Jan 27 6:24am

I have been on Jakafi for several years now for skin GVHD. I have also experienced weight gain and elevated cholesterol. I am now on cholesterol meds and got my cholesterol down to normal. I have to be very mindful about what I eat. Being on Jakafi makes me hungry, so I’m now doing intermittent fasting and slowly losing that extra weight.

I feel like I finally reached a point where I am happy with how my GVHD is managed, but I have to make an effort to not let the side effects get out of hand again.

nanjp10 | @nanjp10 | Jan 27 7:21am

Thank you for your reply!
I have also been thinking of starting intermittent fasting. Will give it a try!
I’m glad Jakafi is working for you!

tdseid1961 | @tdseid1961 | 6 days ago

I gained 30 pounds from my meds, not the same meds as you. I was embarrassed to see people. So last May I started the tirziptide shots and have slowly lost the weight and feel so much better. I am thankful for my health but my mental health was suffering.

mdterp76 | @mdterp76 | 6 days ago

My cholesterol dropped 40 points to 140 on HU, 4x week, 500mg. I follow a Mediterranean diet and eat no red meat. I have chicken, fish, and eggs, each 1x week. I drink plenty of water too. I have my occasional splurges but for the most part, I eat healthy and feel okay. Take care!

nanjp10 | @nanjp10 | 5 days ago

Thanks for your response!
I didn’t start gaining weight until I started taking Jakafi. When just on Hydrea I didn’t have noticeable side effects, but it didn’t help the itchy skin symptoms from PV.
I hope to manage the weight and cholesterol with diet and exercise. 🙏

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