Knee replacement fears while having PV

[ritaandscooter1]

Hi everyone, love reading all your posts and they are so informational. I know this topic has been discussed before but thought I'd inquire again regarding getting a knee replacement which I foresee in the near future.......unfortunately years of running has done a number on one knee. I've had the visco gel inserted last year which has worked great. I wear a fantastic brace when walking 5-6 miles while golfing. Swim regularly and workout almost daily.

I've had PV for over 20 years and am now 62. Couldn't handle HU or PEG so have been on 2 aspirin a day with phlebotomy as needed. Note: Have been taking turmeric for years to assist with inflammation.

Knowing this surgery is going to happen one of these years, I'm really terrified about the repercussions of high platelets (1000 on average) and the impact of inflammation after the surgery. I've never had any type of surgery so have no idea how I will do. Plan to discuss with my MPN specialist (Dr. Tefferi-Mayo) soon but would like input from others who have had knee / hip surgery with emphasis on handling inflammation / healing.

Thanks, Kerry

[hunter5582]

I have not had knee replacement surgery, but have had four other surgeries in the last several years. I do get some degree of reactive thrombocytosis with each surgery. It is in direct proportion to how invasive the surgery is. Injury and bleeding are both triggers for reactive thrombocytosis. It is very reasonable to anticipate some degree of reactive thrombocytosis following a knee replacement.

I have had meniscus tears/surgeries in both knees and now have arthritis in both. I also had the hyaluronic acid injections into the knees. I plan to keep repeating the injections for as long as they work to relieve symptoms. I hope to avoid knee replacement or will opt for the most minimal intervention.

I do also use curcumn to manage inflammation. It is very effective. My Integrative Medicine doc also prescribed L-Glutathione and SPM Active (proresolving mediator). Systemic inflammation is something we must find a way to manage.

Wishing you success moving forward.

[ritaandscooter1 in reply to hunter5582]

Thanks so much Hunter for this information! Kerry

[Orangeboykitty]

I had hip replacement surgery in 2014 as a result of avascular necrosis. The surgeon was in touch with my hematologist, and my hematologist also consulted with a platelet specialist to make sure everything was in order. I was on a blood thinner for several weeks after surgery. I had no problems at all and today I'm walking fine.

[ritaandscooter1 in reply to Orangeboykitty]

That is great that the surgeon consulted with your hematologist and platelet specialist!

[Imkerin]

I had open chest surgery last year. Initially the surgical team couldn't see why liaising with the MPN team might be helpful in monitoring and advising in response to how my PV body reacted to the surgery. Once on board though the two teams had daily contact whilst I was an in patient and closer monitoring for a little while afterwards. This was extremely helpful and at the end the surgical team had a better understanding of PV.

[ritaandscooter1 in reply to Imkerin]

Sounds like collabing between doctors is critical.

[gjh8733]

I am having unicompartmental knee replacement on Mar 2. I have PCV and am on Besremi 500 ug ever 2 weeks since Sep 2022. Was on HU before for 18 mts. Also on aspirin low dose and some Vit/min supplements

In preparation for the surgery I am having a phlebotomy today as hematocrit is 46.4. Stopped taking aspirin Sunday - so 5 days pre surgery

No further guidance provided by oncologist. I will go back on aspirin immediately post surgery

Will add my experience next week when all is over!

[ritaandscooter1 in reply to gjh8733]

Yes definitely let us know how the surgery goes. Best wishes!!!

[gjh8733 in reply to ritaandscooter1]

hi. Providing a follow up to my surgery 5 days ago. I do not feel that my PCV caused any complications with recovery. I have found myself to be very low energy and pretty drained after doing the post operative exercises which may be exacerbated due to PCV and Besremi.

I am on full strength aspirin daily since the surgery and will stay at this level for next month. So, my experience would suggest nothing to fear and just be ready for the rehab!

[ritaandscooter1 in reply to gjh8733]

Thanks for the update! I was wondering how you were doing. Sounds like the surgery went well. I've heard from many others who don't have PV who have said the rehab is a bear!! It may not be the PV but just in general not pleasant for anyone. Hang in there it will all get better and I've heard the rehab is critical for overall success. Kerry

[saltmarsh]

I had knee replacement surgery last year at the age of 75. I'm active with walking, biking, swimming and kayaking but the knee was shot so there was no alternative. I've also had pv for 3 years. My surgeon here in the US insisted my platelets be around 300-350 because, in his words, he didn't want a cardiac event on his table - nor did I. My now former hematologist had me on 1000 mg of hydroxyurea and phlebotomies prior to surgery. You may know that knee replacement surgery is typically high blood loss and that combined with the medication and phlebotomies left me in pretty rough shape post surgery. It took another 2 months for the doctor to determine I was both anemic and iron deficient. He should have been monitoring iron levels more closely and didn't pay much attention to my hemoglobin which dropped significantly. I would caution you to recognize the whipsaw effect of phlebotomies on your blood and use a doctor who is experienced in the broader issues related to surgery with pv. The tests are there but the doctor has to think about the totality of the impact on your system and not just platelets. BTW my knee is doing great. Be prepared for some serious rehab and you will do fine. Good luck

[ritaandscooter1 in reply to saltmarsh]

Thank you so much for your very insightful information!