Hello! I have PV, JAK2 diagnosed in 2015. I have been on Pegasys for the last 2 years and my numbers are well controlled. Lately, my lower legs, knees, and feet have been really achy and feel swollen especially at night… they don’t look swollen but?? Also, several times a night, my hands “fall asleep” ( which is a relatively new thing…). Is this PV stuff? Anyone else experiencing this? I’m 45 years old…
Aching and tingling… is this my PV? : Hello! I... - MPN Voice
Aching and tingling… is this my PV?
Tace Care Yourself It's Chronic Disease
Those are possible PV symptoms, though with your erythrocytosis well controlled it should be less of a problem. Some of what you are reporting are also possible side effects from the Pegasys. online.epocrates.com/drugs/... Or it could be a combination of the two. Or it could be unrelated.
What is is not is something to ignore. It is definitely something to review with your MPN Care team ASAP.
I also experienced aches in my lower legs (shins) and tingling and numbness in my hands, mostly fingers. It happened on several different medications so it was most likely the PV. I discussed it with my hematologist a number of times, but he couldn't help much except to suggest an extra low dose aspirin, which I tried but it didn't do anything. BTW, I'm 75 years old and diagnosed in 2013 with PV, JAK2+. In the last 5 months I've switched to Besremi from Pegasys and those aches and numbness have pretty much gone away. Needless to say, I'm thrilled, especially since I'm on a low dose of Besremi. We're all different and all react differently so it might not work the same for you, but this is the first time in years that I've been pain and numbness free.