Hi, just an update!! ……. I was put on Hydroxycarbamide 4 weeks ago after being diagnosed with Polycythaemia vera (PV). I Have also been having weekly venesections. My horrendous itch got worse and week 3 and 4 have not great for me, on Hydroxycarbamide. Today I was taken off Hydroxycarbamide and have now been put on Ruxolitinib which I’m told will finally get rid of my itch. I have been living with the debilitating itch for 3 years and only when diagnosed with Polycythaemia vera (PV) in November 2024. Does anyone with the dreaded Polycythaemia vera (PV) itch, who is on Ruxolitinib have any advice to give or can share their experiences ? Did it stop your itch and if so how long did it take to start to see the itch disappear ? Thank you Andrew
Hello @Drewplymouth
Thank you for posting your update. I’m so sorry to read about your itching, and how long you’ve had to cope - 3 yrs is far too long. It’s good to know you’ve been taken off the Hydroxycarbamide and swapped to Ruxolitinib, I do hope this improves your symptoms and you can be ‘itch-free’.
There are a few other threads about itching & Polycythaemia vera (PV) on the Forum, which you may want to read, or if you choose to reply in them it alerts those that have previously posted within it.
In case you’ve not found it, this is an informative thread: Burning itching PV - #62 by Willow You might want to connect with others that have shared their experiences within it. You can use the search bar at the top to find other threads too.
Please keep us posted on how you’re feeling and getting on with the Ruxolitinib.
Best Wishes, Heidi (Support Services Nurse)
Hi Drew, unfortunately I know exactly how you feel. The good news is that when I changed to ruxolitinib I noticed an improvement within the week. I started on Dec 28th 2024 so have been taking it for just over two months. My itching throughout the day and night is now almost non existent, I still itch after contact with water but my discomfort/pain is now down to under 15 minutes after a shower. Happy to share more, but I’m supposed to be going out with my wife so I need to stop and put some appropriative clothing on. Talk soon, take care.
Hi Pedro, Thank you for taking the time to reply. I have been taking Ruxolitinib, (2x 10mg per day) for 10 days now. I still have post shower itch, but it is reducing in severity. How long did it take before your post shower itched stopped? Fingers crossed it goes completely soon. Regards
Andrew
Hi Drewplymouth, the answer depends on what you mean by the itch going. I showered today and there was still some very minor itching for a short time, but an improvement on last time. I feel I can start to shower regularly now, though perhaps not every day if I’m feeling a little off. Hopefully it will disappear completely, I’m told it should. Compared to what it was like it is heaven and has almost disappeared. Remember we are all different and your itching may disappear quicker than mine. I hope you. I’ll keep you posted on my progress and we can have a virtual celebration when we are both itch free. Take care.