bone pain

[dgar]

I have been diagnosed with PV and jak2 positive. I have been asked by doctors if I am experiencing bone pain and had not been. Recently, I have aches in my legs which don’t feel like pain but is very uncomfortable and can keep me from sleeping. Anyone know how to best deal with this?

[hunter5582]

Sorry to hear about the aches in your legs, I suspect that if this was MPN bone pain you would be able to localize the pain sense and could speak to that being the issue. This could be a number of things, including iron or magnesium deficiencies. I experienced some severe leg muscle pain/cramps at night due to a magnesiums deficiency. There could be other reasons for the symptoms.

One of those reasons is a medication adverse effect. Musculoskeletal pain is a common Besremi adverse effect. Adverse effects more likely to occur at a higher dose. Suggest that you review your current symptoms with a MPN Specialist familiar with managing patients on interferons.

Wishing you all the best.

[dgar in reply to hunter5582]

Thanks, Hunter-

The leg pain is both legs from the hip down. The sensation is similar to a achiness that reminds me of a bad flu ache where you want to stretch but it doesn’t help. I have been taking Besremi for about a year and a half and my oncologist is thinking of changing to Jakafi because the hematocrit levels are still high.

[hunter5582 in reply to dgar]

It may be that you are not responding as well to Besremi as hoped. While I have responded well yo Besremi, it appears that 175mcg is the maximum dose I can tolerate. it may be that i will need to drop back to 150mcg. Still, I am very pleased with my response to this medication. I have only had to have one venesection in well over a year on low dose interferons. I may end up needing to do one again one year out from the last one.

Please do let us know what you and your care team decide to do and how you get on. Wishing you success with the next steps in your journey.

[dgar in reply to hunter5582]

Thanks, Hunter. I will. I am on 500 UG/ml and still not getting the benefit. I seem to tolerate it well. I will keep you posted.