Runners with PV

[Mrsbrinners]

Hello all! Have just been told about this forum and I am so pleased to have found you! I am looking for somebody to talk to regarding levels of fitness and also having PV.

At present I have been running 4 times a week (up from 3 before Christmas), totalling about 18-20 miles a week. Within that, I have a speed session (intervals or fartlek training of approx 4-5 miles), two easy effort runs (so keeping heart rate at about 160-170 for me, approx 4 miles each) and then one long run which can be anything at the moment between 6 and 10 miles. I have a got a running coach who has been helping me to increase intensity, stamina and speed, and have been working with him (virtually!) since August. I also do one hour of strength training a week, and then throughout the week I make sure I do mobilisation and stretching etc.

Before diagnosis I went to exercise classes etc but have only taken up running the last 2 years. It's been a bit hit and miss due to PV treatment and associated issues (like liver problems) but since summer 2019 I have been ok, and have been able to keep going regularly since last summer. I don't want to lose my levels of fitness but last week I was told by my consultant (who is awesome) that my various levels of HCT Hb iron etc are all really low and I need to pace myself. I am not good at this!

Does anybody else out there run regularly like I do, and has managed to sustain good levels across the blood? If so, how?

[Meeko1982]

Mesbrinners I am also a runner (or try to be)! Before I started treatments I was running on average about 30 miles a week. My symptoms started with severe pain in my abdomen which turned out to be blood clots. It’s been two months since everything started and I’m trying to get back to my performance. My physician told me it was ok to continue but it’s been a bit slower than I was hoping. I have been increasing my daily/weekly miles. After reading your post I think I should check with my physician again.

[Poppy112]

Hello, I’m a avid running fan. Currently run 3 times a week. I also have PV on a low dose of pegasys. My blood counts are all normal and running doesn’t seem to affect them. For me aside from the mental health benefits running gives me I feel my PV is better controlled by regular movement and exercise. I don’t do huge mileage as alongside working my body does tire quickly if I do too much and I just listen to the signs.

For me running helps keep my mind focussed and gets me some fresh air.

Always happy to chat running. Keep up the good work x

[Mrsbrinners in reply to Poppy112]

Hi Poppy! So pleased to hear from you! I would love to chat for sure

[Mrsbrinners in reply to Poppy112]

What kind of mileage do you do roughly?

[Poppy112]

Hi, very pleased you saw my reply. After looking at your introduction on your profile we seem to have a bit in common, think we are similar ages and diagnosed at the same time with PV.

Would be great to chat to you more (unsure how to send messages on here where everybody doesn’t have to read). Find it difficult with the majority of people to talk how we feel sometimes, as they just see me looking well and forget I have PV.

Running wise I was in a running club pre lockdown but I’m not fast at all, just love the feeling I get from running and the fitness aspect. Trained for a half marathon alone in lockdown which took its toll on my body last year. Mileage has dropped significantly but can’t wait return of parkrun (love this).

Please feel free if you know how to message me privately as I’m sure we could chat more x