Joint pain/Bone pain with MF

[Otterfield]

Recently diagnosed with post ET MF, I have started to get aching in my knees and wrists/hands. I will be able to ask my consultant about it next week but I wondered if this is common with MF or possibly to do with Ruxolitinib. I'm not clear on what bone pain would feel like. It seems to happen more when I'm tired or cold and is easily eased with Paracetamol. Any thoughts and experiences welcome. Thanks.

[katiewalsh]

Hi. I’m fortunate that I only have mild pain in my joints and am able to take CBD oil (under my doctors supervision) to control it. I’ve read so many postings here by people with your problem & hopefully some will see this & respond. If not, try & post again. I’m really sorry you’re experiencing this. I believe some patients have found some medications improve the problem. Good luck, I hope you can get help. Katie

[Otterfield in reply to katiewalsh]

Thank you, that is helpful to know.

[hunter5582]

Joint pain and bone pain could be two separate but related issues. One component could be the impact that deregulation of the JAK-STAT pathway has on systemic inflammation. The overproduction of inflammatory cytokines does have negative impact on your body. Controlling inflammation can be an important component of managing the MPN.

FYI - I have tried acetaminophen, high dose ibuprofen, meloxicam, and Lyrica to manage osteoarthritis. Nothing worked as well as Curcumin. I have not needed not taken an NSAID for the osteoarthritis in over 4 years. The Curcumin actually reduces the inflammation and reduces the cause of the pain. For me, this has been a much better approach than trying to just mask the pain.

All the best.

[Otterfield in reply to hunter5582]

Thank you. That word, inflammation, comes up a lot and I really need to look into it. I will ask my consultant about curcumin.

[hunter5582 in reply to Otterfield]

Lots of docs know very little about supplements. Curcumin is an effective anti-inflammatory if you use a bioavailable formulation. It may potentiate a blood thinner a bit, bit not a lot in my experience. I consult with an Integrative Medicine Doc about all of my supplements/vitamins. There can be interactions. Best to consult a doc who really has the knowledge re. This.

[Pte82]

Have you researched quercetin? Check with your consultant before using any supplement. It needs something like resveratrol to increase absorption or better yet in a liposomal form.