PV, asthma and high B12

[Crotchety]

Crotchety here. First let me say how useful all your posts have been. I have PV, taking hydroxicarbamide and aspirin. I have asthma but am investigating whether breathlessness on extreme exertion, not relieved by asthma meds, is asthma, angina or simply sticky blood not moving fast enough. My breathlessness alarms those I play badminton with and I need to put their minds at rest before returning to it. Also last year I developed an involuntary movement in my right arm and leg overnight . It is now very manageable but was enough to stop me driving. It is thought possibly to do with PV, or at least haematological. Chorea it is called. Worse when tired. I have abnormally high levels of B12. I also have bouts of extreme fatigue every two or three days.and sleep for 10 or more hours. I don't drink, smoke, am pretty active and sociable, though finding the fatigue somewhat inhibiting. Eat sensibly. Had several years when PV under control but from last summer these side effects occured. Have had good advice but having to accept my new norm and balance my life around it. I would be interested if anyone else has had similar experiences. I'm married and 75 years old.

[hunter5582]

Sounds like a rough go of it. it is hard to sort out what is what when you have multiple conditions. Hopefully more effective treatment of the PV will resolve the chorea. It is trick to figure out the breathlessness since you also have asthma. Dyspnea (breathlessness) is also a common adverse effect of hydroxycarbamide. online.epocrates.com/drugs/... With cooccurring asthma, this could also be problem of compounding reasons for the problem. The clue might be when did the breathlessness start - before or after stating the hydroxy?

The fatigue is the same thing. The PV can also cause that problem. It is the most common constitutional symptom. Unfortunately, hydroxy can also cause asthenia (fatigue). Figuring it out is the same process, Did the fatigue start before or after?

A case like you describe is beyond the scope of most hematologists. Hope you are able to sort this all out with a MPN Specialist.

All the best,

[Crotchety in reply to hunter5582]

Thank you, Hunter. I was just wondering how significant or common high B12 was , and also if anyone else had had chorea - involuntary movement- with PV? Thank you for your helpful reply. Crotchety ( though not now crotchety!)