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