Anyone else with PV with Jak2+ taking Jakafi20mg?

[rkhabtec]

Welcome any feedback

[Joprv]

Hi, Im MF Jak2+ and been on Jakafi for 6 years, started on 20mg and platelets bombed so have been on 10 per day all that time for symptoms.

Recently I started with another Professor and now back on 20mg as we have to reduce my spleen. All going well so far.

Im sitting here having a transfusion as I write; Im now transfusion dependant and having platelets weekly. They are sitting around 14-18 most weeks.

Im happy to share anything with you.

All the best to you,

Jo

[tracey13]

Hi,

My husband started with PV he's now post PV MF jak2 positive.

He's on 20mg twice a day of ruxolitanib he's been on this a year now his bloods are in good range and have been stable for over 7mths now.

He's 47 years old he started with PV at 41 years old.

Tracey

[MCW22]

I am in the UK. PV Jak2+ and have been on 20mg a day since last summer. 10 in the morning and 10 early evening. My spleen size has reduced but anaemia worsened. every couple of months I am having to take iron tablets on alternate days for 2 weeks to try and balance things out. Most other blood numbers are now the best they have been since diagnoses in 2017. Whites down from 30 to 23. Still feel crap though, utterly exhausted.

Carol

[Inca]

Yes ,I am on 20 mg ,started on 10 a year ago when Hydrea stopped working

for me....augmented to 15 then to 20 two months ago.

I still have the fatigue exactly as always since Iwas diagnosed PV Jak 2 almost 12 years ago. I do keep going ,tho my consultant tells me I do far too much and should rest more!!!I do rest ,I have to when the fatigue hits,Good Luck with it and to others taking the same.