Knee inflammation

[Poppy112]

Hi looking for some advice. Diagnosed with PV 2.5yrs ago and been on Peginterferon for the last 2years, I am 44yrs old. My bloods are all normal if not a bit on the lower side now and until now have been relatively unsymptomatic. I only take 45 every month now.

For the past 4-6wks I have experienced chronic knee inflammation worse at night and waking me up. Really getting me down. Also causes numbness in feet and hands, all of these symptoms I was getting just after diagnosis when I was on Interferon alpha and had to stop, symptoms went as soon as went on Peginterferon.

My questions although I will speak to my medical team, I know inflammation is a big concern with PV, does this inflammation come from the PV or JAK 2 or do you believe it’s from the Interferon (struggling to believe its the Interferon as I don’t take a huge dose). Does it sound like Gout?

I know this is inflammatory based as the odd time I take an anti inflammatory the pain goes (I know we aren’t supposed to take but just desperate).

Also not sure if I’m coming to the end with Interferon and may need to explore other treatments.

Would welcome any advice and thoughts.

[Chaz1]

Hi, it could be gout but usually in toes & fingers. My hubby takes cherry concentrate & is really good for reducing the gout. He also has a bad knee & hip. Not on meds. Consultant said it wasn't MPN related but he gets a lot of pain at night. GP sent him for a xray & knee shows a bit of arthritis so he saw a physio & got a few exercises which seem to help. His knee apparently is like it due to over compensation for the pain in his hip. His hip doesn't hurt quite so much with the exercises & knee a bit better. He's 49 so it could be similar. His GP said it's usually to start having knee problems about this age & it's why there is people in 40/50s taking up cycling as less stress on knees but helps with the pain.

He hasn't taken up cycling though, despite my offer to buy him a bike 🤣

Ask your GP for an xray on your knee, it will help to look to see what the cause might be.

[hunter5582]

MPNs are at the core inflammatory disorders. The JAK2 mutation causes your body to overproduce inflammatory cytokines, which can cause a host of problems. Inflammation from an injury can also cause your body to go into reactive thrombocytosis. I have not heard of PEG-IFN causing the problem you are experiencing with your knee. Best to sort that out with your MPN care team.

I have experienced a host of inflammatory conditions, including significant osteoarthritis in both knees. The one thing I found that helps is a bioavailable form of curcumin. I am also taking L-Glutathione and SPM Active to help with the inflammation.

There is plenty out in the research on the role of inflammation in MPNs. Here is a great presentation on this topic.

youtube.com/watch?v=FzyoPAG...(Not working as expected?)

[Poppy112 in reply to hunter5582]

Hunter thank you very much for your reply. Really interesting presentation. May have to look into a more Mediterranean diet. Didn’t think it was my Peginterferon causing it as now on such a small dose.

Do think stress has had a massive impact on the inflammation I’m getting with coming out of shielding and having to go back to my job in the NHS with very little planning for a safe environment for me to return has been very difficult.

Thanks again

[hunter5582 in reply to Poppy112]

The Med diet is very helpful for controlling inflammation. It is very similar to the "Anti-inflammatory" diet. The polyphenols in olive oil are a good things to increase in diet.

You are correct - Stress does increase inflammation, Note activity via the vagus nerve and biochemically via catacholamines, cortisol and cytokines.

You would think the NHS would be more conscious than most organizations of the importance of safety protocols, particularly for workers from a vulnerable population. Guess bureaucracy is the same everywhere.

Hope it all get worked out. All the best.

[SoledadBarcelona]

Interferon destroyes the thyroides, this is very important for muscles and bones. Do you usually check this?