Jkenn

[jkenn]

Hi just been put on ruxitnib but platelets are still 1340 i had blood clot last year in my neck and arm and both lungs my platelets have been over 1000 for the last three years I have been on hydrea pegus has anyone have this problem with there platelets for so long I have had two bone marrow bisopy just feel I am not getting anywhere with haematogist at the moment any suggestions I live in melb australia

[socrates_8]

Hi Jkenn...

My name is Steve from Sydney, Australia...

I am Post ET / MF myself, and my 'Driver' mutation is CALR (2), I mention this because my Platelets are always very hard to manage...

Currently they are in the mid 800s, which is not where anyone would prefer them of course...

What is your 'Driver' do you know?

Another question might be, what is your current dose of Rux'?

My current dose is 20mg b/d, (w/ anti-virals), low dose aspirin, and on occassion I take Methotrexate, which helps drop my Platelet levels...

Noticed you were previously seeking a MPN specialist in Australia, were you successful in finding one?

Peter MAC has a couple of good people I am led to believe...

JKenn, we also have a very good MPN Patient's FORUM in Australia called "MATES". Where we do an 'Online' meeting every six (6) weeks. Quite informal & insightful for most people seeking assistance with their MPN journey.

MATES FORUM, always provides notice for next meeting, which incidentally is SUNDAY January 12, 6-8PM ADST.

Here's the Link:

mpn-mate.com/forum/viewtopi...

Best wishes & HNY to you & yours JKenn...

Steve

[jkenn in reply to socrates_8]

Thankyou Steve for the link

[ainslie]

rux can cause a increase in platelets but it’s usually temporary, mine went from 600 to 760 for around 6 weeks before slowly coming down, they are now 200, I have PV

[william-Indo]

I experienced such thing like yours with platelets more than 1 mio, even with Jakafi 20mg twice per day still need venesection monthly for more than a year

Treat with combo Jakafi+Pegasys take it down with amazing result.

Free venesection for 2 years already and blood profile in normal and stabil.

Cheers

[sydunipete]

I second Steve’s comments for Pete Mac and also the MPN mates resource.