Anyone else with PV plus high Platelets?

[Paul123456]

My RBC currently 6 - 6.5 and rising and Platelets have been around 550 for couple of years.

Anyone else with both?

Thanks

Paul

[piggie50]

Hi Paul,

I have PV, 12 years now, and also had high platelets. My platelets were around 800/900 until I started Hydroxy 4 years ago. They are now around the 250/300 mark.

Best wishes

Judy

[Paul123456 in reply to piggie50]

Thanks Judy.

Did your RBC and Platelets start rising at same time?

Do we have ‘Masked PV’ as opposed to ‘Overt PV’?

My concern is that one study in 2014 indicated Masked having poor prognosis than Overt. However, how much of this was due to delays in deciding correct treatment since initial diagnosis was ET.

[piggie50 in reply to Paul123456]

Hi Paul,

I've never heard of masked PV and overt PV. I really don't know about my red blood counts, I've only been keeping a note of my bloods the last 3 years. I was diagnosed with PV in 2005 by blood test and the Jak 2 gene was present. I was told I had PV with a bit of ET thrown in as my platelets were also high. My heamatologist has never really referred to the red blood count only platelets and hematocrit. I used to have more venesections than I do now to lower the hematocrit, ( venesections don't lower platelets) I started on Hydroxy to lower the platelets when they were getting near 1000 and I was approaching 60, which has worked for me. I accepted my diagnosis at the time and have been very happy with my care since. Treatment for ET and PV is very similar.

I feel my prognosis is as stated - normal to slightly reduced life expectancy. Most of us die of something other than out PV.

I hope all your investigations give you some peace of mind.

Best wishes

Judy

[piggie50]

Just a thought Paul, are you confusing RBC with HB, haemoglobin? If so, yes my HB was high, this is what my GP picked up on and referred me to haematology.

Sorry if I've got the wrong end of the stick!

[MaryELWoods]

Yes RBC 6.5 and PLT 781 on most recent labs. Was originally thought to have ET, but then high RBCs showed up, changing diagnosis to PV.

[Paul123456]

Judy - didn’t mean to sound alarmist. I suspect this 2014 Study was influenced by a change in procedure re what criteria qualify for PV and therefore a one off glitch as misdiagnosed PV patients had worse outcome. I’m at Guys later this month and will try to get to the bottom of this.

Will ask what the difference is between patients diagnosed with straight PV, those who start ET and PV at same time and those who progress from ET to PV.

Judy and Mary - do you know your WBC count? Mine is about 11.

Best wishes

Paul

[piggie50 in reply to Paul123456]

Hi Paul,

I've had this so long now that maybe I have become a bit complacent and not kept up to date with all the research. My last three white blood counts have been 7.2, 7.8 and 9.9. Strangely now I've looked, twelve months ago they were 15.8, 11.4 and 14.8. I don't know what this means? Maybe I should pay more attention! I must admit if I feel ok, which I do I don't tend to question much.

I'll also be interested in the info from Guys.

I'll watch the video Mary, when I've caught up with inspector George Gently!

Thank you

Judy

[MaryELWoods in reply to Paul123456]

10.4-11

[mhos61]

Hi Paul,

I think that there is some overlap of presenting symptoms between ET and PV for some patients, especially if you have the Jak2 gene.

I must admit I often wonder could I possibly have masked PV, and recently started googling this. Recently, I came across the link below which is extremely interesting and makes a lot of sense in my opinion.

For me, it was discovered in a random blood test that I had raised platelets (500). My hb count was in the very high 15s. By the time I saw the haematologist six months later it had increased to 16.1 and my haematocrit had steadily increased to 47.9; interestingly, my platelets remained stable at 500. My rbc was fine though at around 5.2, wbc normal too. I was given a diagnosis of ET based on the Jak2 mutation without a bmb and commenced on hydrea because of my age. This has brought all the raised counts down to an acceptable level. I am enormously grateful for that - but I fear that if I was in the early stages of PV it has masked it even more, if you see what I mean.

I will be very interested in the answers you receive at Guys. I hope you enjoy listening to the link.

Mary x

m.youtube.com/watch?v=NTmRy...(Not working as expected?)

[friendofpiglet]

Yes. When first diagnosed my RBC was 6.29 HCT .59 WBC 14 Neutrophils 11 Platelets 716 (quite why the units are as they are escapes me - but all the normal counts are on my blood test request anyway).

I keep a record of all my results, being one of those annoying compulsive types, and all these counts yo-yo with the seasons, my WBC and Neutrophils seem to escalate in autumn and winter probably owing to exposure to the lurgi-ridden masses!

HCT down below .40 last check, next check on Tuesday. I'll see what happens then.

My haematologist resists venesection because it elevates platelets apparently, so I just keep taking the HU tablets which appears to reduce all counts - sometimes too much I fear.

I don't worry too much about life expectancy. Too many positive survivors on this forum!

Andy

[Paul123456 in reply to friendofpiglet]

Andy Thanks for your reply, when were you diagnosed? And I assume PV JAK2

Re survival, the way I see it is we need to last another 5 years and then decent chance medical advances will save the day. A full blown cure appears unlikely but good chance a long term remission will be available.

Best

Paul

[friendofpiglet in reply to Paul123456]

Diagnosed September 2014.

Shortly after retirement - thoroughly annoyed because I was looking forward to growing old disgracefully.

5 years?! I'm looking at 15 minimum (survival that is) my family tend to live for ever.

A good friend of mine's son has just published his PhD dissertation, the title of which is incomprehensible by the way, but it's all about cancer science. He's a very bright bunny and part of our future.

[Paul123456]

Amazingly, just had a reply from a leading UK expert:

Actually in the UK we prefer not to use the term masked PV. I think it is a bit misleading. My personal view is that patients with PV who are managed as PV whether they had a thrombocytosis first (so-called masked PV) or not have the same outcome.

The indication for drug therapy in your case as in others would be:

Age >60

Previous thrombosis or haemorrhage

Very large need for venesection or inability to tolerate that

Symptoms of iron deficiency

Increasing spleen size

Other symptoms not responding to standard treatment eg itch

WBC >15-20

Platelets >1000-1500

[Hmmm79]

HI Paul, I've got PV, Jak2, and high plateletes, they were >1,000 before I was put on anagrelide. RBCs seem to go through phases of being high and needing venesections and not. WBCs fairly high too. What is that list of symptoms above? Thanks.

[Paul123456]

That’s the criteria used to determine whether to commence drug treatment.

Best

Paul

[Bluetop]

Yes, when I was diagnosed 18 months ago, my RBS were 6.3 and Platelets 1324. Both are back to near normal levels now. As I was 66 and classed as high risk, I was prescribed hydroxycarbamide. Good luck with yours.

[PVPVPV]

Hi there, I have PV but been doing fine. In the last couple of years, my platelets have been a bit above, a bit below the required level of 400 (accepted rang 150-400). I had a sequence of 425 408 382 but this week, it jumped to about 570. The haematologist said there was nothing to worry about but upped my dose of hydroxy slightly. However, when I got home, I thought, hang on a minute, I had a venesection last week, and don't platelet counts go up in response? So I would like to ask is that right i.e. platelet count would go up in response to a venesection and, if so, how long does it take for "normal" blood levels to recover. I am thinking maybe the platelet count will be coming down to an acceptable level and there will be no need for me to increase my does of hydroxy. Any thoughts on this?

[Paul123456]

The only time I had a venesection/blood test the week before another blood test, my Platelets were up from 625 to 700. Also any other bruising, other than that caused by venesection, can raise Platelets.

What were your Bloods pre starting hydroxy? 570 seems quite low to up dosage. Was your HCT up as well?

[PVPVPV]

I have no other bruising, although my elbow and wrist hurt a bit from either a knock and/or playing tennis. My HCT is 0.44 in response to a couple of venesections over the last two months. I started hydroxy March 2013 after my platelets were up from 700+ to 990, although I had a bad bruise at that time. I am currently on 1g hydroxy 5 days/week and 0.5g 2 days a week. The doctor said I should now take 1g every day, so it is only a slight increase. However, I don't want to increase unless it is strictly necessary. I still suspect the jump to 570 platelets may not be giving the true picture i.e. the recent venesection + perhaps the elbow/wrist problem.

[Paul123456 in reply to PVPVPV]

Not scientific but the one time I had large bruise on leg my Platelets jumped 100. I assume you are on aspirin so bruise very easily.

Why did you opt for Hydroxy and not Interferon.

What were your RBC, WBC, HTC when you started Hydroxy? Seems a bit odd to start Hydroxy at sub 1,000 Platelets unless principle concern your RBC?

I’m approaching point where need to start medicating, hence the interest.

Thanks

Paul

[PVPVPV]

I quote from the letter sent to my doctor and copied to me: "Haemoglobin 12.2; corrected PCV (HCT) 0.497; White 16.4; platelet 986. ...... platelet and white count have been steadily rising over a number of months and his venesection requirement has increased. We therefore feel..... time for medication. We discussed the main options of medication etc etc. " I can't remember why we chose hydroxy. By the way, the letter also notes my report that I had a very large bruise on my elbow caused by walking into some furniture. However, it is true my counts had been steadily rising. I didn't want to go on drugs and preferred venesection but accepted advice on medication. I started on 500mg but six months later, dose increased to 500mg x 5 and 1g x 2 (although looking back my counts seemed fine) and further small increases because platelets increased.

[shiftzz]

When I was diagnosed my platelets were 1143, now 169,, HCT was 0.614