Running with PV?

[RoundTheWorld]

Hello. Have any of you with PV had medical advice re. which types of cardio exercise are good or to avoid?

I wondered if modest levels of running have any meaningful impact on RBC production/ full blood count and iron?

[hunter5582]

Cardiovascular exercise is good for anyone. Maintaining good cardio-health is particularly important for people with MPNs. While exercise will not have any immediate effect on your blood cell values, it will certainly have positive impact on your health.

[RoundTheWorld in reply to hunter5582]

Thanks Hunter. It’s helping physically and mentally at the moment.

The diagnosis (and some bothersome symptoms) are certainly motivating me to prioritise exercise, hydration, diet and sleep, so there are positives!

I get fatigued the following day if I push it too much so am building it back up slowly. I’d lost a lot of confidence due to frequent migraine aura. Anti-platelet meds keeping them away now has made running feel more do-able again. Another positive! Fingers crossed I can stay consistent and patient…

[Aldebaran25]

I did not give up on running when I was diagnosed with PV five years ago and in fact all the consultants I met have been positive about it. The one advice was to carry water and absolutely not get dehydrated. My impression is that running has helped me with some of the symptoms although to tell the truth, year after year, my running ability has been steadily getting worse and nowadays I often resort to Jeffing.

[RoundTheWorld in reply to Aldebaran25]

Thanks Aldebaran25. I had to look up Jeffing but that sounds like a good approach.

My times are also much slower than when I used to run (and I wasn’t speedy then) but at least now I have an explanation (or excuse!) for why any gains are very gradual.

[john0084]

Hi round the world, I've been doing my local park run, 3 miles every Saturday, it definitely get all the blood rushing around but it doesn't improve my blood, I was about to go this morning first time for a few months after straining my hip but my calf muscle hurts after warming up. I might walk round instead. I forgot to mention I have pv and take hydroxy.

[RoundTheWorld in reply to john0084]

Thanks John. That’s very encouraging to read and well done! Parkrun is such a positive event - I ran my local one several times a few years ago. Hoping to get back to it but taking it slow and steady and starting on Interferon soon so will see how that affects everything.

I’m doing the NHS C25k (again). Getting back up to to longer times but running slowly.

[Timjonze]

I’ve been running and have been doing half marathons fairly regularly. I asked if this was ok and my haemotologist said it was encouraged and to keep doing it. His thinking was that we are all at risk for clots and this is one thing that helps prevent it. Of course it depends where you are with your PV so should always ask specifically about your own case.

[RoundTheWorld in reply to Timjonze]

Thanks Timjonze. I won’t be doing any half marathons but it’s great to know others are able to do so and that the advice is that generally exercise is a good thing. I’m finding if I push it I’m too tired and a bit dizzy (could be other causes for that though) the following day so building it back up v slowly.

[Timjonze in reply to RoundTheWorld]

Yeah I get dizzy afterwards sometimes but doctors didn’t think that was PV related

[Timjonze in reply to Timjonze]

And obviously to echo others here - staying hydrated very important!

[RoundTheWorld in reply to Timjonze]

Interesting that lots of people here say their dizziness has been dismissed as a symptom. Seems too common among this community not to be one. While I’m running I’m ok but I can feel quite ‘uneven’ on the cool down walk and the next day can notice fleeting moments of mild dizziness - guess it could be more fatigue than anything else but it’s hard to ignore.

[ainslie]

any exercise is good for us, I would say do it but don’t overdo it 🙂

[RoundTheWorld in reply to ainslie]

Wise words. Thanks Ainslie

[BeOutside]

Thanks for this question RoundTheWorld! I am in year one of my MF and learning how much I can push my running and hiking. I have pushed too far a few times and got super tired for a few days, but no impact on bloodwork.

[RoundTheWorld]

Thanks BeOutside. Enjoy those runs and hikes. (I mainly enjoy the running after it is done but it helps a lot with stress, sleep and feeling a bit more normal!)

[GrooverET]

I’m almost 63 yo, diagnosed with ET/JAK2 a year ago. I take 1000 HU daily. I see my doctor every 6 weeks now for a blood draw and CBC and each time, I ask about exercise and the ability to run at a hard pace in particular. Currently, I run 25-30 miles per week and a couple half marathons a year and my doctor has been very supportive of the effort. Additionally, I try to get in some resistance training (lifting weights), golf and skiing, so I’m pretty active and was so prior to my diagnosis. The only difference I’ve seen since the diagnosis has been my recovery time from the above activities. Also, if I sit for too long (for example, on a flight), it takes a couple of minutes of motion for the joints to feel normal. There are so many insightful people on this forum and they will likely have better information on the journey than I do, but so far I haven’t changed any pursuit of activities based on this blood disorder.

[RoundTheWorld in reply to GrooverET]

Thanks GrooverET. That’s all good to read - and long may it last!

[sticksofmaine]

i have gone to CrossFit for five years six times a week with no changes in my blood counts or health. it is bit tougher the day after a phelbotomy.

[RoundTheWorld in reply to sticksofmaine]

6 times a week! Well done!