I just have a question: I was diagnosed with PV 3-19 treating with baby aspirin and phlebotomy only. I also have osteoarthritis in knees. I had a knee replacement done 3-19 with continued swelling and now becoming increasing painful. Both swelling (from before) and pain come only after being on feet for hours on end. I have been two 2 doctors. 1 stating I had synovitis treated with meds, injections, said more surgery but then released to pain management due to my back. He also stated I had a failed knee replacement. (my opinion didn't really know what was wrong) The original doctor, who I am seeing now, stating if I had synovitis would have swelling all the time. (didn't know that but made sense) He ordered a bone scan which was normal which is good news. He is stating that my hamstrings are tight and putting a lot of pressure on that knee where surgery was done. I guess I am really questioning that and am at a point were I don't know what to think. Now my other knee is starting to act up again. I am starting to think maybe the PV has more to do with it then anything. Any thoughts would be helpful and thanks!
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Alex9621
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Hi Alex, I also have PV and in November last year I banged my knee on the bed base. My knee immediately swelled up and turned the most horrible yellow/green colour. I was unable to weight bear on it for weeks. My doctor thought I had damaged the hamstring but sent me for an X-ray to make sure I hadn’t chipped the bone. X-rays we’re clear so my doctor didn’t even bother to contact me until my RH factor was raised and I was referred to a rheumatologist. When he examined my knee he said he wanted an MRI scan of it. 4 weeks later I still don’t know what’s wrong with it. I still have problems walking with it and when I sit my knee locks then snaps as I try to move it. It will be a year in two weeks that I hit my knee. Maybe PV is a factor in recovery?
I expect there may be more than one thing going on based on your description. Your instinct that the PV may be involved is. I expect, spot-on. The dysregulation of the JAK-STAT pathway caused by the JAK2 mutation causes more problems than increased hematopoiesis. It also causes the overproduction of inflammatory cytokines. The resulting proclivity towards various forms of inflammatory disorders can cause a host of secondary issues. A major surgery like a knee replacement would absolutely be a potential cause for significant issues. No surgery like this should ever be preformed without you hematology care team being involved both before and after the surgery. Your care team would absolutely need to involve a MPN Specialist for such a major surgery.
I do not see in your note what the MPN Specialist monitoring your case has said about the issues you are experiencing. It is unlikely you will find adequate answers without collaboration between the various specialist involved in your case.
NOTE: I also have significant knee problems and am working to avoid ever having a knee replacement because I know how badly my body would respond due to the PV. I recently had hyaluronic acid injections into both knees. I experienced significant relief. I may be able to defer knee surgery indelicately by repeating the injections when needed.
NOTE2: My new orthopedic doc (who is really a great doc) asked me "What is Polycythemia Vera? It has been long time since i was in medical school." Do not assume that your orthopedic team has any real understanding of the implications of having PV. Most docs do not. That is why it is so important to have a MPN Specialist on your care team.
I must admit I do get very upset! I really don't think people know what you go through with these diseases! It's kind of sickening what I know I have gone though (and what I am sure other people of gone through) with these diseases. But having said that I am learning, especially from a friend of mind with Huntington's disease, is that I can't get upset at the people (doctors, nurses, family, or friends) it's the disease itself I get mad it as it is extremely difficult to deal with a disease that people don't understand. Once I understand that it lets me deal with my own emotions of everything a little better.
I too have PV and struggled off and on with moderate knee pain. I have years and years of running so there is very little padding left in them. Still try to workout swimming, walking, and biking. The pain comes and goes but I think continuing to workout the best I can is a huge remedy......Keep moving! What I found really interesting was how the 3rd booster shot caused major knee pain for 2 days! I walked into the hospital to get the shot with no knee pain but within 5 hours of shot had horrible knee pain. Must have initiated a cytokine storm and major inflammation. Had to ice knees for hours and walk around with locked knees. Very strange. Then after 2 days my knees were suddenly pain free! Then weeks later I had a colonoscopy in which they sedated or knocked me out with Fentanyl and another opiate which I've never had as I've never had surgery or been put to sleep. I woke up just fine but the next day was completely knocked out and felt extremely sick for the entire day. I had a temperature, extreme fatigue, headache and coughing. Got tested to check for covid which came back negative. Once again I contribute this to PV reaction as well or Pegasys reaction in which I take a super low dose.....22.5mcg. I'd be terrified to get any surgery after these two reactions!
The low dose peg weekly has been working out great. Counts are coming down gradually which is what you want to see long term as the bone marrow gets retrained.
Good news. Were you ever on HU? We see a pattern here that a min effective Peg dose is good. Agree about marrow benefits, Some of our Drs need to get with this info.
Sorry if this is off subject. But maybe Alex 9621 above might ask Dr about Peg too based on Alex's prior posts.
I have spoken with my doctor about changing treatment. Will address it again on my next visit in December. I am very reluctant to start any of them after seeing the list of side affects I have seen people have but not totally shut off from it. I just hope I have choices on what I can take. The thought of taking low dose chemo is a bit scary.
Agree on side effects. The studies I've seen suggest similar rates for HU but different types and patients. If discussing PEG with your Dr you should discuss any immune issues (including some types of arthritis) and mental depression tendencies. If Ropeg INF is approved you might consider that. it is easier on the body than PEG.
The advantage of PEG INF vs only-PB is the possibility of less disease progression and longer survival. You might like to check the post "Long term INF results" to see why I have noted INF in many of my posts. This actually compares PB (and HU) to INF and is big news for us.
Regarding joint pain, I have plenty in my arms, elbows. while joints still work ok. It started with my HU last fall, but might be from the ET. My Dr says just from my exercising but reading here it's clearly MPN or HU related.
I don't think this is relevant after knee replacement but in the realm of a general knee pain with PV...my bone pain tends to follow a pattern ending up with my knee finally becoming very painful. My GP who has been down this PV rabbit hole with me, from diagnosis to specialists, said he could see no relation to the actual bone pain/inflamed sheath I experienced and suspected I was walking oddly due to the increasing pain above and below. I worked with my Pilates instructor to establish how I should be walking and practiced that religiously to experiment - a miracle cure! When the pain begins, I become very mindful and walk in a really uptight way for a few days until it again becomes habit. Between that and the bone pain running it's course the knee recovers nicely. So PV related in a way but not directly and a cheap, very doable fix.
I have genetic osteoarthritis, seems to affect the fingers on the female side and the knees the male side, my remedy is usually I have a shower every morning, then spray the knees with magnesium oil spray, which seem to lubricate the knees for the day! The colder wetter times of the year, like now, are usually the worst? Ironically just had a bone densitometry scan last Friday, never had one before, dramatic after scan effects. My Uncle and brother have both had their knees done!
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Leg and/or bone pain 
Knee Operation
Pain killers and Hip replacement
PEGASYS and Besremi Site injection pain
