Swapping from rivaoxaban to warfarin

[stargazer5761]

Has anyone swapped from rivaoxaban to warfarin and if so why . I have been on rivaloxaban for nearly 2 years but I just wonder if I would feel better on warfarin with an higher I NR. I have had 2 p/ e in the past . But just feel so tired exhausted weary and bones ache all the time . Any thoughts ...

[stargazer5761]

I'm on that as well but not noticed any difference in my condition

[Lure2]

I wonder if you have got a Specialist for APS who really understands this illness?

Is it your Specialist who has suggested that you should try Warfarin and why? You are also on Plaquenil. Do you have other autoimmun illnesses aswell?

Best wishes from Kerstin in Stockhom

[Manofmendip]

Warfarin does not, necessarily give as consistent an anticoagulation as might be desired, in my experience. It is very affected by what you eat and drink and INR needs frequent monitoring, especially in APS/Hughes patients. I was on it for 8 years before being moved to Fragmin injections by Prof Hughes and I feel much better than I did on Warfarin. I had several clotting incidents while on Warfarin, including a major clot in my right hip, as well as bowel bleeds and blood in the urine.

I would like to try Rivaoxaban but the consultant that I am under the care of in Bath will not let me try it, as it is not licensed for APS/Hughes. I have pointed out to her that neither is Fragmin but she says that Fragmin has a track record, in practice, in APS/Hughes patients.

Dave

[Lure2]

If you consider Warfarin after all, try to selftest and learn to monitor your own INR.

In that case try to get a Doctor who understands that we need a higher INR than "normal people" and who will let you have an INR over 3.5. I think Warfarin is the best choise for us with APS, if we can learn to handle it. Probably a better solution will come in the near future.

I have been selftesting for 4 years now with no bleed and clot (as far as I have noticed) but you have to test both in vein and in finger for a rather long time to find out if there is the SAME difference between the two testresults. It can be a discrepence between 0,1 - 04 which is OK. I have a difference of 0,7 - 1,1. If my INR is high the discrepence is bigger.

For me the machine-result is higher than the vein-value. So I have always to reduce my INR at home with 0,7 - 1.1 (depending how high the INR is) to find the real value for my INR that day which is showing in my vein. I am primary APS with all three antibodies incl Lupus Anticoagulant. I test every second day at home and visit the hospital for a double-cheque every second or third month or when I feel it is necessary. The test in the vein should start within 4 hours after my home-testing to be reliable.

Kerstin in Stockholm

[Ozchick]

I've been on Rivaroxaban for nearly 2 years as well. Did you get that as your first line of attack or were you on warfarin/Clexane first? I wasn't able to keep stable INR's and got a clot with Clexane. I think a bit of fatigue and aches are almost 'normal' with APS and I found also, that if I don't exercise, I feel much worse. Plaquenil didn't help in the 3 months that I took it so I gave that up. So far I'm really happy with the Rivaroxaban and would never consider going back to Warfarin with all the testing etc that it entails.

[stargazer5761 in reply to Ozchick]

Hi no I was on warfarin first and like you Inr all over the place and cardiologist put me on rivaloxaban. Just a thought that if Inr was higher would I have all thee aches and pains . Also same here I take hydrochlorquinne I've been on it over 6 months and no different so will probably come off that soon as it's not making any difference at all .

[Ozchick in reply to stargazer5761]

Rivaroxaban works differently to Warfarin so you can't do an INR test. I take my 20mg daily dose at night because I found it works better for me than in the morning. I was feeling a bit blahh most mornings when taking it then, but I was also on some other meds so I can't really say if it helped. Could be worth a try. I also was more consistent taking it in the evening at the same time