PV joint pain

[MaryELWoods]

Please help me understand why I have excruciating knee and hip pain constantly. My onc doesn't understand it. I'm on Pegasys 90mcg weekly. Truly, the pain is unbearable. Anyone have any insight? Thanks.

[Mazcd Partner MPNVoice]

Hello Mary, I am sorry that you are having this awful pain, many of us with MPNs suffer with bone pain, and it is excruciating. You could ask your GP about some pain relief, or even a referral to the pain clinic, they may be able to help you with ways to alleviate the pain. Best wishes, Maz

[MaryELWoods in reply to Mazcd]

Thanks, Maz. I want to be able to show him that this pain is real. He doesn't believe me. Is there any research I can point him to that you are aware of? Thanks.

[Mazcd Partner MPNVoice in reply to MaryELWoods]

hi Mary, I can send you a copy of the graph from the Mosaicc study which clearly shows the percentages of pain and other symptoms suffered by people with MPNs against non MPN sufferers, can you email me at [e-mail] so I can send it to you. Best wishes, Maz

[MaryELWoods in reply to Mazcd]

Thanks so much! Sending you an email now.

[ntrahan1998 in reply to Mazcd]

I am having the same issue trying to prove my pain is real. Can you send it to me too? I am emailing you now.

[Ann16]

Hi Mary, the pain is real. I have horrible pain and usually worse at night when I lay in bed. I am trying not to take pain pills because I feel so drugged and hard to focus. Good luck, I hope you find some relief. Ann

[MaryELWoods in reply to Ann16]

Thanks a lot! Any idea what is causing the pain?

[Stevesmum42]

Hi Mary. Sorry I cannot add anything to the conversation, except to say I do hope you get some relief to your pain soon,

Regards Sandy

[MaryELWoods in reply to Stevesmum42]

Thank you.

[clevemic]

Hello Mary. I have PV, and am also taking 90mcg of Pegasys weekly. Like you, I have bone and joint pain. My pain settles in different bones, and lasts days or weeks, then moves to a new place. My hips, however, have been the worst. It often wakes me up at night. My oncologist suggested taking Claritin, an over-the-counter allergy medicine. It sounds weird, but it truly works. I have had relief when taking it, but I try to take it sparingly, as it seems to dehydrate me. You may want to do like me, and have it on hand to take when nothing else seems to be working. Wishing you the best!

Michele

[MaryELWoods in reply to clevemic]

Wow! So strange! But I definitely will try this. Any idea why it works? My oncologist simply doesn't think my pain is related to my PV.

[clevemic in reply to MaryELWoods]

Hi Mary. When my oncologist told me of this treatment, she said that it is unclear why Claritin works to alleviate bone pain, related to MPNs. She is well-known as a leader in understanding and treating MPNs, and speaks nationally on this topic. I, therefore, did not hesitate to try it. Good luck!

[MaryELWoods in reply to clevemic]

Thanks! I'll try it!!