anyone else on Rivaroxaban, just star... - Hughes Syndrome A...
anyone else on Rivaroxaban, just started this I know most people with D.V.T. are given wafrin but My I.N.R. was to unstable an advice
There isn't much data yet for rivaroxaban; it is a newly released drug. Most people with an unstable INR take lovenox/clexane which has been around a long time.
i took riverboxin for a short time it didnt suit me so im now on an ijection called faunerparaxin i think thats how u say it
Rivaroxiban is just undergoing trials in London called RAPS (Rivoroxiban in APS), my Cunsultant is hoping to move me onto this instead of Clexane because Clexane can cause Osteopherosis with long term usage. I too was unstable with Warfarin and suffered Arterial Clotting on Tinzaparin. Rivoroxiban is also commonly used immediately after hip replacements.
Please keep us up to date on how you get on with it. Are they planning to test your INR at regular intervals?
With this being new to APS sufferers shouldn't they test to make sure INR is steady, just whilst in the early stages?
This should not be available to APS patients as it has not been trialled as certainly has not been approved by NICE in the UK. There is a multi centre trial - RAPS - which should be starting next year. The main areas of contention is lack of monitoring (this is being built into the trial) and lack of reversal. Please have a look at our Patients' Day YouTube video and listen to Professor Beverley Hunt for more info about the new oral anticoagulant and APS: youtube.com/watch?v=CFi9KpK...
I was put on 20mg a day a couple of months back at the Manchester Royal Infirmary, so far so good i'm glad i went to the appointments as my bloodwork showed my lft' s and lht's (?) were high as soon as i switched from the clexane they went back to normal, providing i dont have anymore bleeding episodes i dont have to go back until March 2013. My Dr is really good he has put his number and his teams emergency numbers on my patient alert card as a precaution, which is very reasurring.
Hi, I have just been prescribed 15mg Rivaroxaban one in the a.m. and one at night for three weeks then I will be moved to once a day, for thoses of you who have seen me post questions before, I have M.S. since 1995, then protien s, and after a third major back op got D.V.T. which I realise can happen but as I have already had major surgarys before, it was a sock so blood tests were taken, which showed I had a.p.s. antibodies, as I am on betaferons asked if this could give a false reading, so my hematologist spoke to my neurologest who promply said she will just have protien s , so mean while I was on wafrin with an I.N.R which went from as low as 1.4 and the highest I ever got in three months was 2.2 this was clearly not working for me, so it was decided just to take clexane if I went on a long flight, other than that I was to carry on without anticolagligants, after being told my memory problems were M.S my tingling hands and feet and yep your a little deppressed, I GOT SO ANGRY I went to my hospital, saw my M.S. nurse who said its just m.s., your a little upset, I demanded to see the on call neuro who did a few tests also said I was upset, the reaso n for me being upset that no.one was really listening, I KEPT SAYING i know my M.S. this is different, needless to say they sent me home with happy pills but agreed to an mri in the near future, three days later leg is getting tighter trainer is not fitting so went to see my G.P who did a test which confirmed a second D.V.T. so back to another hospital for an ultrasound for the confirmation, which yep lucky me, so back on clexcen ijections until I saw my hemo, who then gave me a choice of wafrin or the new drug as wafrin did not work for me, and yep you will all say I am crazy when I confirm I am going to be flying long haul in december to do my most favourite thing in the world apart from my husband which is scuba diving which will be safe on the new drug, but boy I really had to fight, so sorry it is a lot to read and yep spelling is really bad but my brain is not good with remembering, thanks for listening
no have been told nothing else needed, apart from blood test to check kidney function, no problem as already have to have bllods taken for betaferon, full count liver and kidneys, do not know if anyone else has used this drug whilst being on intaferons, fingers crossed
I will not be able to ask, until next appointment in three weeks, I will call my M.S. nurse tomorrow and let her tell my neurologist, he will not be happy, as when my hemo guy spoke to my neuros one said yes we will have a look and the higher one told he no it could only be protien s, but I will leave them to fight it out, I have had enough of that at the moment. love and hugs to every one, the more people who talk, about all these new discoveries, the more it tells us to grab hard at life. I intend too.
