Polycythemia without any symptoms

[cythemia]

I was diagnosed with Polycythemia last December positive for Exon 12 genetic mutation. I have not experienced any symptoms at all, either before or after venesection and only venesected after HCT high during blood test. Should I expect symptoms to occur eventually or do some people just live their lives being venesected and taking aspirin with no other symptoms? Also does the HCT eventually settle down, I have not had a full four weeks without it climbing again and requiring venesection. I know that by comparison this doesn't seem like a big problem but I'm still researching the condition and thought someone here might be able to throw some light on it.

Thank you in advance.

Cythemia

[Mazcd Partner MPNVoice]

Hi cytemia, good news that you are not experiencing any symptoms, not everyone does, and hopefully you will continue not to have any, it may be that in the future you might experience some symptoms, but not necessarily. Blood counts go up and down which is why you will be monitored. Regards, Maz

[lizk1993]

Hi there,

I've been diagnosed with PV for almost two years now. I did have symptoms long before I was diagnosed and although those have eased they're still there. Everyone is different and you may well continue without symptoms (and long may that last) As for HCT, my own experience was that I had to have regular vensections to begin with, but am now iron deficient and seem to able to go six months or so between venesections. I imagine that you'll eventually be the same. Have a good look at MPN voice, there are people's stories on there where you'll be able to see what others have experienced, and, of course, lots of useful info about the condition itself.

Take care

Liz

[redumbrella]

Hi Cytemia, I was diagnosed with PV 14 years ago and am Jak 2 neg. I am on Asprin and maybe 3 to 4 Venesections each year as my HCT does not tend to go above .50. the main symptoms for 13 of those years were fairly minor fatigue and bone pain. In the last year both of these have increased hugely and so my haemo is suggesting a review of my treatment. I am glad that for the moment that you are sympton free and hope that this continues for many years as in my case.

Garry

[Innessant]

Hi, I was diagnosed with PV in 2014.After 5 years I am asymptotic and apart from a few itches after a shower I am in great health. I am a 62 year old male.I do however watch my hematocrit carefully and have monthly venesections to stay under 45%. Baby aspirin is the only medication I take.So it is watch and wait.So all OK so far. I live each day to the full as this is a wake up call . My Dad died of MF in 1999.

[hunter5582]

Some with PV do fine with just aspirin and phlebotomy. I went to see an MPN expert who took m off the HU as in my specific case, the risks were not worth the benefits. I have always been essentially asymptomatic - for over 30 years. Mild splenomegaly is about it. The secondary symptoms related to inflammatory cytokines (I am JAK2+) have been more bothersome. The great thing is that when I got started on the phlebotomy regimen, my BP went from Stage 1 hypertension (135/95) to normal/healthy (115/75 or lower). Hope you have success with your tx strategy.

[JP2018]

I was diagnosed with PV back in October, JAK2 positive. I'm 58 years old. My frequency of venesections started at several times per week, then gradually less often over time. I'm currently at about 90 days interval and hoping that interval will continue to increase. Besides the low dose aspirin I'm not on any medication. Overall I feel good and live an active life. I do have some fatigue at times, especially if I don't sleep well the night before. But I don't have much to complain about and feel quite fortunate. Hoping and praying that will continue for many years to come, for you as well!