Ruxolitinib for PV

3 replies
26 subscribers
242 views

Hello! I am 37 and have had PV for 11 years along with Budd-chiari syndrome. I recently got diagnosed with a small bowel neuroendocrine tumour too. I am currently in dabigitran 150mg a day, aspirin 75, peg interferon once a week and recently started ruxolitinib.

I have felt pretty rubbish on this ruxolirinib, it's been since October now. Needed a blood transfusion as very anaemic and one day I had to call an ambulance as i went supra ventiruclar cardiac ! I have noticed weight gain and this is really getting me down. Being constantlt fatigued is bad enough but the weight gain just upsets me. Has anyone else experienced weight gain on this?

Thanks!!

Natlaie x

Naugus 3 months ago

Hello Natalie,

I have been taking ruxolitinib for almost a year for Mylofibrosis. It has helped me a lot with the fatigue and I did gain over a stone in weight but it was welcome. Weight gain is frequently mentioned by other sufferers and it does lower the hemoglobin. You are very young to be suffering so and I hope you find the right combination of meds to feel better.

Yani C 3 months ago

I lost 21lbs but after Ruxolitinib I gained 45lbs in 18 months. I have joined Weight Watchers and am slowly losing some lbs. My dose is 10mg x 2. Frankly I am hungry all the time but I am learning to live with that feeling as I realise Ruxolitinib will suppress leptin so I don’t get satiated. The drug makes me feel better and my numbers are ok

Naugus 3 months ago in reply to Yani C

Interested to read about leptin. I experienced much the same reaction and like you the drug does make me feel better but my numbers are going down, albeit slowly, but down.

More from this forum

Ruxolitinib for PV