Pains in knees and legs

[Chel1]

Hi we'll had results back on blood test to see why I've got such pains in knees and legs everything came back normal I've got et and jak2 pos I'm on asprin and hydrea so he wants to see me tom to give me steroid injections in knees as pain is so bad what do you do is it the et or the meds getting very fed up with this

[Minu68]

Hi, I have ET, JAK2pos, and take hydroxy.

I have had leg pains long before my diagnosis. My hip and knee are bed on my right leg. Had xray, shock to find at age 52 i need a total hip replacement. They think the ET caused my mild arthritis to progress it. I'm still learning about our condition, but there's something about cytokine storms that some of us get, which attack joints and cause inflammation. No problem found with my knee, and the bone pain I get is also attributed to ET, as the bone marrow is working all the time, rather than stopping whenever there are enough cells. When my platelets go below 600 the bone pain goes.

I get fed up with being in pain too, it's not easy, tiring physically and emotionally. I have to take time out to rest and also have no interaction so I can just be ,not pretend and let myself feel sorry for myself. Take care, drink lots,that does help x

[Chel1 in reply to Minu68]

Ellis thanks for reply nobody really explains this condition I'm the only one on my gp surgery so he says he doesn't know much about it but gave me steroid injection today in both knees so fingers crossed it helps wasn't pleasant . I k ow how you feel it does really get you down hope all goes well wit hip op

[hunter5582]

Sorry to hear you are having issues with pain in the joints. I have osteoarthritis in many joints in my body, including the knees. Am up for surgery due to a complex meniscal tear in my left knee (will be my third surgery for this).

A bit short on specific info about your specifics, but there is likely a link to the MPN and the joint pain you describe. The JAK2 mutation does more then drive hematopoiesis. It also causes an increase in the production of inflammatory cytokines. The overproduction of inflammatory cytokines is thought to be linked to many of the secondary symptoms people with MPNs experience. MPNs are increasingly being looked at as inflammatory disorders. The dysregulation of the JAK-STAT pathway (one of the kinase systems) has wide ranging effects well beyond the kind of neoplasm that causes the increased production of blood cells.

I hope you get some symptom relief ASAP. The steroid injections might help temporarily, but you can only do that rarely do to the impact on the joint. I have had success in managing the osteoarthritis with a Curcumin supplement. Once I found a good curcumin blend, I have not needed nor taken a NSAID in over 4 years. If you decide to try a supplement like this, do know that there are big differences in the various blend/brands. Also - these supplements tend to be mildly blood-thinning.

ALl the best to you.

[Chel1 in reply to hunter5582]

Hello thank you for that very interesting had steroids injection in both knees said knees very worn the one I thought was ok was the worse one fingers crossed I get some relief it is a lot easier tonight

But with covid he said be along wait actually to see knee specialist

[hunter5582 in reply to Chel1]

Very worn knee sounds familiar. Have had two meniscectomies. Just developed complex meniscal tear in left knee with two chondromalacias. Near to bone-to-bone contact. Looking to do something restorative this time. Considering gel injections, stem cell injection, cartilage transplant, and artificial meniscus. I want to avoid a knee replacement by any means necessary.

WIll be posting about how it goes. Due to our MPNs our situation is more complex. Most ortho-docs have no idea how to account for MPNs, so it is up to us and out MPN Specialists to inform the process.

Hope to hear more how it goes for you. ALl the best.

[Chel1 in reply to hunter5582]

Thanks for your reply I don't won't to have knee replacement either so interested to see how you get on take care