Exercising with PV & Fast Heart Rate

[BluePeony]

Greetings All,

I’m wondering if anyone is having issues with exercising. My labs are almost normal now after 3 months of HU and 2 venesections. After a slow half mile, my pulse is between 130 and 140. Previously it would go into the 120’s after a brisk 2 miles. It is worrisome (and exhausting), but I don’t know if it could actually be a problem. My next appt isn’t until February. Any suggestions?

[lizl]

I've had polycythemia for 5 years, been on HU for nearly a year, I'm 61 and a runner. I used to monitor my heart rate and sometimes it fluctuated to 240, I was referred to a heart specialist and it seems everything was ok, just getting older. However, I decided to stop monitoring it so I could enjoy running. If you've any concerns then I would check with your GP and get referred to a specialist.

I hope that helps, good luck.

[BluePeony in reply to lizl]

Good advice Lizl, thanks. I’ve had some problems already with my primary doc, as she refers any complaint, I.e., recent pain, to the hematologist and vice versa. I like to get answers to problems so I can get on with my life, so I will persevere.

[Searcher56 in reply to lizl]

Good to hear you can run at the age of 61 with PV. I would like to run like a gazelle myself.

It has not happened yet.

[lizl in reply to Searcher56]

I have the long legs for a gazelle but that's about it, haha.

[Searcher56]

Do you mean running or walking? I have been walking but in September I also wanted to start running. After 3 months I have not made much progress, 200m is the most I can run continuously. I am 62, JAK2+ on 9x500mg HU. I thought it was the HU causing it but Prof Harrison did not think so. I went to see my GP for blood tests and am awaiting the results. More news after Christmas.

[BluePeony in reply to Searcher56]

No running here! I’m 70 and have had joint issues for years. I use the elliptical, which is very easy on an arthritic body. I just got an appointment with a new oncology doc because the current one and I were not connecting at all. I hope to get more answers in January. Thank you for your reply.

[kiwitraveller]

I am 67 and gym 3x week and often do 10mile hikes. Some days I have a bit less energy but still do it but don’t push myself. In the gym I focus on weights to keep my bone strength and it seems to be working well. I have prefibrotic Myelofibrosis and my platelets have dropped from an initial 1600 in Oct to 600. On Hydroxy down to 3x a week due to impact on white bloods. I do worry about progression which is vague with prefibrotic- anyone else in this situation?

[Janeydot]

Hi this is only my personal view which is in NO way a docs opinion lol but my experience is that since I have been diagnosed a few months ago and put on aspirin, exercise has been much more enjoyable and my heart rate goes higher. I’ve always used my Fitbit to monitor heart rate and before diagnosis it was such a struggle to get my heart rate up to 160 (high cardio zone). Now it gets there much more easily and as a result I enjoy exercise more. My thinking is that now we have our treatments underway our blood is thinner which allows for the heart to beat faster?

[Janeydot in reply to Janeydot]

Also I’ve ran lots of races etc in the past and I think 120 is very low even for a slow jog?! So a bit higher would seem more natural to me. Again - no medical backing behind this just based on my experience