Ruxolitinib and high platelets

[RosemaryHarper]

I have PV and been taking Hydroxycarbamide for a year and had many side effects and my blood counts are not being controlled. I came off Hydroxy 3 weeks ago and started on Ruxolitinib since when my platelet counts have kept going up - now 680. I wondered if anyone else has had this experience and how long it takes to settle down. I am on 30mg per day. It always helps to hear how others are coping! Thank you.

[cdr_krishnan]

I am diagnosed with PV sometime in 2011 and after few months of phlebotomy I started with Hydroxy in 2012 , since my platelets were not coming under control with phlebotomy alone .Again , this year, starting with 01 Jan ,my Hematologist has advised me with Ruxo 10 mg per day, since I was not getting absolute control over my blood counts .It is now almost two months since I started with this low dose of Ruxo and I find my blood counts are almost getting stabilised , if not fully. I do not experience other side effects such as mouth ulsers , fatigue, stomach upset etc , now with Ruxo.

You have not indicated if your platelets are still rising after being on Ruxo for 3 weeks plus .I believe your counts will surely stabilise within a month or two and do not get worried about this .I trust that you will feel much better after a couple of months and leave the medicine do its job .God bless .

Cdr.NCN Krishnan

[RosemaryHarper in reply to cdr_krishnan]

Thank you so much, that is very reassuring - my platelets have been increasing for the last 3 weeks but as you say I have to give the meds the chance to do their work

[francesb]

Hi, I don't have PV have MPN not specified, possibly two MPNs running together, possibly changing to MF so complex diagnosis, however, Hydroxy controlled my counts well but had to stop it due to adverse reaction. Have been on Rux several months. It is only just starting to bring my counts down very slowly. I was told by Guys hospital that it is slow working so to give it time. I am on the maximum dose. Hope it works for you. Best wishes, Frances.

[RosemaryHarper in reply to francesb]

Thank you so much for your reply - I am the only patient my consultant has on Ruxolitinib so they are unable to tell me how long it will take to work.

[JediReject]

Hello Rosemary, , I'm on Rux post Atem Cell Transplant and my Platelets have gone up but it's good for me as they are now 150 as opposed to between 40 and 70 prior to taking it. My consultant was concerned it may lower platelets further but it hasn't. I was on Rux prior to transplant and it controlied counts well. I would say you are on a high starting dose in my view rough obviously I'm no expert. I'm on 20 mg a day and think I was on that before so if your count keeps going up your Hem may reduce your dose as he is learning too as you said you are his only one on Rux.

So give it more time to settle in and then review it in a month or two.

Best wishes --Chris

[JediReject]

Forgive typos I have significant cataracs 😎