Is bone and joint pain with PMF normal?

[Itch]

Hi I have intermediate PMF, diagnosed 10years ago, now 71. Not requiring any treatment, but finding overall bone and joint pains increasing, especially after rest; does anyone else suffer in this way?

[JediReject]

Hello Itch , , what you describe could well be associated with your PMF after 10,years however it could also be a contributory factor alongside arthritis for instance. It's good that you're managing Intermediate Stage without any treatment and maybe you would benefit from seeing an MPN specialist if you don't have one to see if Ruxolitinib or another drug might help and also getting a definitive answer to your joint , bone pains.

Do you know if your spleen is enlarged and do you have other symptoms like night sweats , itching , fatigue ? If so you will benefit from a thorough review going forward though you've done really well 10 years on from diagnosis. I was Intermediate Stage 2 at about 10 years and took Hydroxycarbamide from diagnosis due to symptom burden and then Ruxolitinib for about 15 mths before opting for a Stem Cell Transplant.

Good Luck going forward, I hope you get some answers.

Regards - Chris

[Itch in reply to JediReject]

Hello, thankyou for your informed reply; I do have all of the symptoms you’ve mentioned & slightly enlarged spleen. Currently under investigation for bone profile & x-rays for arthritic changes. I’ll wait for results & in meantime take pain killers. I think I’ve been lucky to have got this far on “Watch & Wait”; my Myeloid team would like me to continue a bit longer & then maybe start a clinical trial.

[CraftySpider]

Hello Itch, I have had PMF for 19 years, been on Hydroxyurea and baby aspirin. My joint pains have worsened recently , especially in my hips and shoulders….I am going to query this with my haematologist this week, as have read on here that the HU can exacerbate the joint pain. Sorry, not really an answer, but like you I am curious to find out if it is the MF or the medication causing the pain to get worse.

[Itch in reply to CraftySpider]

Thanks for your reply, it just sometimes helps to know that others have similar symptoms. I wish you well. Susie

[hunter5582]

You may find this presentation of interest in regards to your question,

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

[Itch in reply to hunter5582]

Thankyou for this very informative presentation; lots of hope on the horizon! My haem doesn’t want to start me on Ruxolitinib due to low hb of 10. I’ll wait & see what next year brings. All the best. Susie

[hunter5582]

There is significant benefit to some of the other JAK-inhibitors for people with anemia. That is a major step forward for people with MF. I particularly liked the presentation of which medications are specifically indicated when anemia is part of the profile. The information about other symptom relief was also quite helpful.

Wishing you all the best on the next stage of your MPN journey.

[katiewalsh]

hi. Just a note about pain caused by arthritis. I saw an arthritis specialist about hand pain. The tests for arthritis were negative but he said many types of arthritis aren’t able to be identified. I know many on here have luck with changing to a low inflammatory diet. It’s highly recommended both for MPNs & our health generally. Good luck. Katie