PV and knee replacements

[jillydabrat]

Hi my MPN family

I was away in Whitby last week and though I knew my knees were very bad I didn't realise how bad until I tried to walk around Whitby on their hills and cobbles. I did this on the Monday and now, a week later, I am in absolute agony with my knees.

I really think I am overdue for a double knee replacement but I have been putting off going to my GP because my bloods are so good I really don't want to stop taking my Hydroxy which I am assuming I would have to when undergoing surgery.

Has anybody else with PV had knee replacements while on Hydroxy and, if so, how did you fare?

Thanks everyone

Jill xx

[Tinkerbell13]

OOOh, poor you, sounds incredibly painful. Hope you get some helpful replies. All I know is that the friends who have had knee replacements have just been over the moon to say goodbye to all that pain, once the surgery and recovery has happened....do wish all the best for you and please keep us al posted how you are doing Love Tinkerbell. By the way was recommended ice packs round the knees, and hope your GP could prescribe some or you could get hold of some, just for now.

[hunter5582]

I have had other surgeries when on HU and they did not want me to stop the med. If anything, the opposite. In any sugery in which you have bleeding , tissue damage, and inflammation you will likely experience reactive thrombocytosis. Increased platelet production is the body's natural response to insult or injury. Many docs are not familiar with the issues of doing surgery on a PV patient. Highly critical that you insist on close consultation between the osteo-doc and the hemo-doc.

[Aime]

Hi Jill, not on hydroxy and rediagnosed with idiopathic erythrocytosis which means I still have an excess of red blood cells. Had a knee replacement with excellent results. My ortho consultant and haem spoke with one another so both were aware of the op and my bloods.

Recovery is hard work regardless of other ailments and with fatigue is not easy but you just need to be patient with yourself. I’m lucky to have access to a hydrotherapy pool, which annoys my skin but helps my joints and definitely speeded up my recovery from my knee op.

Make sure you take all your painkillers to begin with so you get the pain under control from the beginning.

I would certainly recommend the op. I know I didn’t have hydroxy to worry about but it’s finding a balance between your bloods and the pain in your knees. Not an easy op but very worthwhile if you’re prepared to do the physio work.

Hope this helps, kind regards

Aime xx😻😻

[Wyebird in reply to Aime]

Curiosity made me google your condition. It says it’s a result of PV. Do you have PV?

[Aime in reply to Wyebird]

Hi, this is where confusion reigns! I was originally diagnosed with PV. After a second opinion last year, I was negative to both jak2 and xeon 12 gene mutations so was told I did not have PV. However my symptoms and treatment remain the same as before and I have too many red blood cells but cause is unknown.

It is only my personal opinion but I think in the future another gene mutation will be identified for PV which will become a marker for those without jak2 and xeon 12 mutations.

Hope this makes sense, kind regards Aime 😻😻

[Wyebird in reply to Aime]

Thank you . I agree on all counts. Do you have an mpn specialist? Lol the good thing about an MPn is free prescriptions. I’m over 60 so it doesn’t count.

[Aime in reply to Wyebird]

I live in Scotland so free prescriptions anyway. My haematologist is not an mpn specialist but the one I saw for second opinion had more experience. Kind regards Aime 😻😻

[Superwoman]

Hi Jillydabrat, I have Et had a total knee replacement nearly five years ago now, and it all went fine, had to come off Hydroxycarbamide and Aspirin a few days before op then was reintroduced back a week later, the hospital kept a really good eye on my bloods the whole time, bloods hardly altered which was good, my only problem was the pain relief, at first it was fine morphine via a drip, when that was removed they gave me Tramadol and boy was I off with the pixies, they had to stop quickly, and let it come out of my system, they then put me oxycodea which lasts twelve hours which was good, then eventually took paracetamol.

They also put both my legs in a kind of floating boot, which stimulates the legs stops any blood clots forming. But when you go to see the surgeon you must tell him everything about your condition so they can be prepared.

Jean