Ruxolitinib

[waddles22]

Husband has been on Ruxolitinib { Jakavi} 15grms twice a day for the past 15 months. He has never felt better no problems with taking this drug at all and all going well with his bloods etc. He has had knee problems for a long time but has not had knee replacement done as over the past few years he just had to sort his PV and MPN out. He is at that stage now where he really needs to go ahead with knee replacement but he doesn't want to have any further blood etc problems. Can anyone give him advise as to whether they have had similar problems and surgery

[Heidi-W]

Hi there

Really pleased your husband is feeling great on the Rux. I had a hip replacement 5 months ago and now on phased return back at work. I have PV and just on hydroxycarbamide and aspirin. The main concerns obviously is clotting risk. My anaethetist said they would be happy to operate on a person as long as the platelets were less than 1000 but that may vary from hospital to hospital. They did it with a spinal anaesthetic which enables you to be up and mobile quicker than a general so hopefully again reducing the clotting risk. I then went on apixaban blood thinner for 5-6weeks and wore the lovely TED stockings for 8 weeks (only meant to do 6 weeks but thought I'd wear them a bit longer). The op went really well. My Hb dropped about 3 units during the op form 130s to 104 so one benefit was a delay in the need for venesection at the time for the PV. Obviously with having the PV, major surgery can be exhausting so I think you just have to accept it may take a little longer for energy levels to return compared to others but as for healing etc it all went well.

Hip replacements generally are tolerated better than knee replacement, with the hip being a bigger joint so can tolerate the swelling/bruising better etc. Potential for the knee replacement to be bit more painful than a hip and long term you have to be very good at sticking to the knee exercises to get the range of movement back with the knee.

All in all I'm really pleased I've had mine done-its still a bit stiff and achy but no horrid bony pain and it means I'm not taking any painkillers which was getting very difficult with the PV brain fog and trying to work.

It may be worth your husband chatting to his haematologist as I'm not sure if there would be other issues being on the Rux but hopefully he can get sorted. Wishing him the best of luck.

Heidi

[tracey13]

My husband has got PV the last 3 years his spleen has been enlarging he's now got a permanent uncomfortable feeling in his left side he's on hydroxy every other day.

He's having a scan tomorrow if this feeling he's got is his spleen we going to see if he can go on this drug your husband is on as it reduces the spleen size .

Hope your husband gets his knee sorted out.

My husband had two operations last year he didn't stop his asprin when he had his nose operation the bleeding was bad he had to be admitted .

Tracey