Hi there Immortalist. Well done with working out!!! I am nearly 73 and diagnosed with PV two years ago. My heart nearly stopped with rbc overload and many many litres of blood drained over a year.
Have been a gym goer for forty years, initial pv slowed that down but I’m now back to full strength, as strong as I was 15 years ago. Five days a week, lifting heavy weights such as nearly 100kg bench press. Some cycling, walk the dog is easiers as my toe gout episodes have subsided and pain is low. I am on Xarelto 10mg. Haemo says should be on hydrea to bring wbc down. Yet I feel pretty good for age. Have a 15 min nap in pm to get over tiredness. Maybe it helps that my wife is younger and a personal trainer, with healthy food etc in our house. If you let muscles atrophy you might as well give up on normal life.
I hope this is interesting reading for you. We all run the risk of death daily in one way or another. Good to mitigate the risk but KEEP LIVING at the same time, huh?
Stay positive
Regards, Peter

Hello again, Immortalist,

That’s an interesting question, and I did find a very informative article for you entitled, “Physical Activity as a Nonpharmacological Symptom Management Approach in Myeloproliferative Neoplasms: Recommendations for Future Research.” Check it out at https://www.ncbi.nlm.nih.gov > pmc. It discusses preliminary evidence suggesting that physical activity may be an effective approach to improved patient-reported outcomes related to fatigue, depression, and things such as early satiety, sleep, and a generally improved quality of life.

After doing my own research (which comes naturally, my being a nurse), it is pretty well known that moderate exercise improves blood flow. I don’t think you will find any data either supporting or restricting what might be considered more than MODERATE exercise in your pattern of five-day workouts. Of course, getting one’s physician’s approval for such a program is always wise. Intense exercise does increase hemoglobin levels in the blood and red cell mass, and in some cases of polycythemia where the red cell count is quite abnormal, intense exercise probably will be discouraged. However, the moderate kind improves blood flow and helps to reduce the risk of blood clots.

From my experience, contraindications for such a degree of working out would include certain heart conditions, unstable diabetes, hypertension, hyperthyroidism, unstable angina, stroke, and some other conditions. You said in your story that you were recently diagnosed with PV, however, and you probably are in fine physical condition now, I suspect, and probably haven’t had it long enough to have many visible symptoms. Like most of us, the diagnosis came as a complete shock when an MPN shows up as a result of an annual blood count. Do read the article above. I think it will be enlightening to you. Cheers for a nice weekend!

Thank you so much Peter for your amazing recommendations. wish you another 100 energetic and healthy years. The problem is that doctors have different opinions on this topic and we really need an updated science based opinion. but anyway I really love what you are doing.
Stay young and healthy🙏

I loved your answer Maryann. I practice daily exercises. Probably not as intense as Immortalist. But I do practice yoga once a week, aqua fit, line dancing and cardio class.
On top of that walk every day for 40mins. And work three shifts a week nursing. All the things you mentioned have to be good for us.
I will look into your link posted. Thanks so much.
Lyn

Hi Immortalist,

I'm 35F with ET.
i found out that there is no real limitation to the activities we are doing, beside the the general advices/indication (ie. no contact sports, no skuba diving, etc).
thus, looks like everyone has his/her own optimal amount of activity, and for most of the people will take a little bit more to find out which one it is, especially if they have not been active before the diagnosis.

I used a diary where i tracked the symptoms (in my case, mostly migraines with aura and fatigue) and the amount of phisical activity...(i love data, what can I say??)
I was able to define a threeshold, for which going below the benefits of training were not significant and an upper one, for which "overtraining" was worsening my symptoms.
what works for me is 3/4 days of resistence/strenght training with heavy loads (weightlifting, bodybuilding, ca 70 mins per session, avg 140 bpms, with peaks to 170bpm) and walking ca. 30/60 mins the other days (avg. 90/100 bpm)
OR
3 days strenght/resistence training with heavy loads + 1 swimming session (ca 30/40 mins) + walking 30/60 mins the rest of the weekday.

If i increase the days of heavy training, migraines got worse.
If I decrease the heavy training days, migraines and fatigue are back.

If you are not experiencing any worsening of your symptoms and the benefits are good, i would say that you found out your perfect receipt.

Just follow the normal instructions valid for everyone, with or without mpns:
1. rest & recover
2. do not go in overtraining
3. adapt a good diet plan that support the energy requirement your activity has

What kind of activity/training do you do?