Anyone with P Vera taking dagabitran rather than warfarin?

[Dianne-Guisborough]

Hi

I have P Vera diagnosed oct 2016 . H/O DVT and PE 10 montgs prior to diagnosis and was on rivaroxiban following thrombolytic events . When i got diagnosed my Haem changed me from rivaroxiban to warfarin as a) INR could be monitored and b) reversal agents easily available shpuld they be necessary .

I am now on Ruxolitinib and the warfarin .

We have finally got to the stage where I now see my Haem approx every 4-6 weeks and from blood chemistry point of view things are going well . However I have to say , since changing on to warfarin (and I totally get why my excellent Haem did this) I am at the hospital virtually every week under the care of the anti coag team for INR testing. In 18 months I have possibly only gone 2 weeks between INR posdibly 3 or 4 times due to really eratic swings in INR . I do not drink , eat about yhe same amountvif vit k ruc5h foods each week and we are all scratching our heads why my INr swings about so much . We seem to be constantly titrating my dose up and down on a weekly basis.

Sorry for my long winded lead up to my question but is anyone out there with an MPN on Dabigatran (Pradaxa) - I have read there is now a licensed antedote Idarucizumid ( Praxbind).

I know I am lucky to be so well monitored but if I could take another type of anti coag which required less monitoring it would be great . I am going to discuss this with my Haematologist but in the meantime I was wondering if any of you lovely MPN pepes had experienced anything similar .

My INR was 2.1 last week and this week it is 4.4 although I's had no change in warfarin doseage last week- it's baffling! I thought the P Vera was bad enough to get my head round but this warfarin m'larkey is another level !🤣🤣

Any advice greatly appreciated

Hope everyone out there in my " MPN family" is keeping well

Love Dianne

Xx xx

[RosemaryHarper]

I am PV and take Apixaban which is pretty hassle free. Good luck!

[Dianne-Guisborough in reply to RosemaryHarper]

Thanks Rosemary

Kibd regards

Di x

[Hidden]

My Haematologist and Cardiologist put me on Riveroxyban and took me off Warfarin to save me forever being at the hospital, has no problems since, touch wood.

[Dianne-Guisborough in reply to Hidden]

Thank you I totally agree

Kind regards

Di x

[Rachelthepotter]

Hi. I’m on rivaroxoban, and my haem explained that the “ no reversal agent” issue was more of a theoretical risk than a real one: situations where you need emergency surgery are rare ( car crash and so on ) , and if they happen no one is likely to give you a reversal agent in time anyway. But badly controlled anti coagulation is a real, every day risk. And faffing around with INR fluctuations messes up your quality of life.

All the best

[Dianne-Guisborough in reply to Rachelthepotter]

Thanks for taking the time to reply Rachel

That's exactly how i feel - it takes over your life - I've given it 18 months and am now getting abit cheesed off with it to say the least and as you say swinging from sub therapeutic ( was 1.6 at one point ) to being over co-agulated is not ideal.

Kind regards

Di x

[Sallush]

Rivaroxaban here too. Warfarin without the hassle. An emergency situation is not something that is ever planned - so reversal is neither here nor there.

[Dianne-Guisborough]

Cheers

Kind regards

Di x

[nivana]

I'm just on Rivaroxaban, which seems to be working ok. My consultant didn't want me to take warfarin, because of the constant blood checks.

[Dianne-Guisborough]

Thanks Nivana

I am going to discuss with my Haematologist again to see if I can change to one of the new alernative drugs

Kind regards

Dianne x

[PhilReade]

Hi I’m on Apixiban morning and night was on asprin and Clopidogrel but couple of rent TIAS my Haematolygist and stroke consultant put me on Apixiban

Regards

Phil