New to the group

Hi everyone, I’m new to the group and wanted to introduce myself.

I'm Marcus and I was diagnosed with Polycythaemia Vera when I was around 16–17 years old, back in 1989. Over those early years I had numerous treatments, including radioactive phosphorus therapy. This seemed to help manage the symptoms. 

Fast forward to around 2010, and many of the symptoms slowly started returning — aching joints, legs and bones, burning sensations, thick-headedness, migraines, neuropathy, nausea, an enlarged spleen, and rising red blood counts. I’ve also developed proteinuria and kidney disease alongside everything else.

Over the last couple of years, I’ve tried really hard to improve my health. I stopped drinking alcohol completely, started cycling regularly, became much more physically active, and managed to lose around 15 kg. Unfortunately, my weight has plateaued at around 100 kg for the best part of a year, and I can’t seem to shift any more weight no matter what I try, even though my blood results continue to rise.

I’m 53 years old now, and my main goal is simply to stay as healthy and physically active as I can for as long as possible, especially for my son.

One symptom that has become much worse recently is the itching, particularly in my eyes. They’re constantly itchy and watery, and I was wondering if anyone else with PV has experienced this as well.

I’m due to have another venesection soon, and there’s also talk of another bone marrow biopsy in the next few weeks.

Its reassuring to know that I'm not alone and I look forward to connecting to other people in the group.

Best wishes

Marcus