How slowly does PV progress

[Paul123456]

Hi

My first post

I’m 62, was diagnosed PV just over a year ago, I reckon I was ET from about 2012 from past medicals. My RBC about 6.25, WBC about 11 and Platelets about 500-550.

A year ago I was RBC 5.25, WBC 7 and Platelets the same.

Is this a normal level of progression? I’m just aspirin and venesections at the moment.

I feel fine but wondering for how long? My only symptom is pin prick itching after baths/showers.

How long can an average PV patient enjoy good quality of life?

Thanks very much for reading. Any comments greatly appreciated

Best Paul

[JohnSC]

Hi Paul,

I am similar to you in that I am 62 and I was only diagnosed with PV this year. It does take a little bit of getting used to but on the positive side with current treatment options my understanding is that we can look forward to a life expectancy only a little bit less than non-PV sufferers, the difference being due to the slightly higher risk of Thrombosis etc.

Like you I also have a bit of itchiness after a shower, and I do also have some fatigue and weariness, but apart from that I get on with life.

Talk to your doctor and research your treatment options but you can reasonably expect to feel fine for the foreseeable future.

For myself I have come to accept that PV is part of my future, but only a part, and I am determined that it will not have a big impact on my planning for an active retirement which I am looking forward to starting next year.

All the best.

John

[Paul123456 in reply to JohnSC]

Thanks John.

What is the trend in your RBC/WBC Count? I assume you are still on venesections?

My RBC/WBC slowly trending upwards, RBC up from c. 5 to 6 over last 12 months. WBC from 7 to 11. I reckon my venesections now averaging just under two months.

My MCV has dropped from 80 to 65 as I become more anaemic, ferritin under 10. My consultant says MCV can drop to 50!

I’m not suffering any noticeable fatigue and wonder if because RBC high? The PV somehow offsetting effects of anaemia.

I’m trying to lead a spectacularly healthy life style - anti inflammatory diet (seen the trial?), Omega 3 =/> Omega 6, minimal sugar, low iron intake (no red meat, fortified bread etc) and over 10K steps per day plus two work outs per week.

My one vice is 30 units of wine per week!

A great medical question is would you freeze your symptoms now for the rest of your life. I would.

[JohnSC in reply to Paul123456]

Hi Paul,

Yes I am still on venesections and Aspirin. I did have 10 venesections in the previous 3 months, which knocked the stuffing out of me a bit, but now it is only once a month to see if that stabilises my Haematocrit at below 45%. I am also hoping that less frequent venesections will result in me feeling less fatigued.

You might be right about the higher RBC helping to counteract the anaemia, as my fatigue certainly increased as my Haemoglobin and Haematocrit counts decreased.

Like you I am also trying to improve my overall cardiovascular health by moving to a vegetarian/seafood based diet, and exercising more, mainly be leaving the car in the garage and walking instead, this allows me to exceed 10K walking most days without even thinking about it.

I am also taking iron free multi-vitamins, Curcumin and Omega 3 tablets daily, as I don’t think they will harm and they might do some good. I also like dark chocolate, so I am using PV as an excuse to eat a 50grm bar of 100% Cocoa chocolate a day with a handful of mixed nuts.

I share your vice, but I try to make sure I keep hydrated by drinking glasses of water along with any alcohol.

Would I freeze my symptoms now for the rest of my life? Yes I probably would, as one of my on-going concerns is progression to MF.

All the Best.

John

[linds in reply to JohnSC]

Hello John,

Just to say don't over worry about progressing to MF. I did after a short while with PV. I take Rux now and truly do not have a bad quality of life. Perhaps the fatigue being my biggest moan. I still do most things I did before except can't walk the same due to sore bones but as I am now 70 I blame anno domini. So should life take you in this direction it's really not that bad in my case anyway. Best wishes.

Linda

[Paul123456 in reply to JohnSC]

John

I started off taking daily turmeric, Omega 3 and garlic combined with 75 mg aspirin, thinking all will reduce stroke risk. Ended up in A&E with nose bleed that wouldn’t stop. Now a bit more circumspect with my non aspirin blood thinners.

Re frequent venesections, I went through tricky phase with veins not healing in time. I now have following regime

1. Ask nurse to use cotton wool ball/gauze pad instead of plaster and stick down with tape so ‘wound’ reasonably compressed. I keep on for 24 hours.

2. Then apply arnica for a couple of days

3. Then Hirudoid cream for a few days

4. Then a couple of light ultra sound sessions spaced over a week.

Not had a problem since.

Best wishes

Paul

[Mazcd Partner MPNVoice]

Hi Paul, we can understand your concerns about life expectancy, the advice in our booklet is this: in general patients with PV who do not progress to MF or leukaemia can expect to have a normal to slightly reduced life expectancy if properly monitored and treated as necessary.

I hope this helps. Best wishes, Maz

[Paul123456 in reply to Mazcd]

Thanks Maz. Regarding progression to MF, is this still circa 20% chance over 15 years?

And would you know how the 20% splits between the slower progressing form of MF and the more aggressive type?

Best wishes

Paul

[Fika500]

Hi Paul,

I had PV for 27 years. I was diagnosed aged 46. I lived well for those 27 years- had itch, especially after showering but found if I dressed quickly it subsided. Also cooler showers help- avoid very hot showers/ baths. I had venesection every six weeks ( initially the venesection were more frequent). Over the last three years it has progressed to post PV Myelofibrosis. I developed gout which is well controlled with Allopurinol. I became quite debilitated ( lacking energy, sleeping a lot) spleen very large and had bruising. Thankfully I started low dose Ruxolitinib about seven weeks ago and have much more energy & blood counts are improving,

This outlines my experience but please remember that everyone is different. The most important thing is to have your bloods monitored and keep your haematologist informed of your symptoms. The symptom tracker is helpful for this.

Best wishes,

Joe