Rivaroxaban

[jules69]

Hi I have been diagnosed with Hughes and been taken off warfarin due to unstable INR, I am due to start on Rivaroxaban and wondered whether anyone has been on it and how they got on with it. Any advice/information would be most welcome.

Thanks Jules

[london-lass]

Hi

I am surprised that you have been taken off warfarin because of unstable inr.

I am sure many people with APS, like me, have unstable INRS. Prof Hunt says it is par for the course. I understand that there is no antidote for some of the new drugs, so I myself prefer warfarin. I agree with above message... proceed with caution!

[jules69]

i am based in UK and have still been getting clots whilst on warfarin, been admitted to hospital on numerous occasions which the hospitals believe are ruptures in stomach kidneys and caused by warfarin, I went to see a specialist in Hull who advised that I could not tolerate warfarin and that is why i am commencing on rivaroxaban, have been told by both GP and specialist that this is NICE approved and is not a trial...

[Glitterwitch]

Hi, Rivaroxaban is NICE approved, but not yet for people with APS. I was put on it last year due to an unstable INR and it did not work for me. I have previously had a large blood clot and the "one dose fits all" approach with rivaroxaban was not enough to prevent it happening again. I must stress that everyone is different and I am sure it will work fine for lots of people. My advice would be to keep a note of how you are feeling while taking it and if you think things are not quite right then report it to your doctor. Hope it works for you! xx

[Manofmendip]

Hi Jules

I agree with APsnotFAB.

Fragmin is a tried and tested drug for APS and I feel much better on it than I did on Warfarin.

My INR was reasonably stable but after 10 years Warfarin seemed to not be keeping my symptoms in check anymore. Fragmin has given me my life back again,

Best wishes.

Dave

[Hidden]

Agree with the above - Rivaroxaban is agreed by NICE but not approved for APS - the RAPS trials are starting this June in London. You may want your GP to be aware of this?

[jules69]

this may sound silly but is APS and Hughes the same thing?

[jules69]

thank you , have appointment with GP to now ask lots of questions as im a bit out of my depth with this, thank you for your help

[KathrynKathyKate]

I have been on Rivaroxaban (Xarelto) for 2.5 months now. I'm in the U.S. My GP put me on it because of fluctuating INR. My Hematologist told me its not approved for APS but if I'm going to take it I must take a baby aspirin too. So far so good. I have had a few times where I feel a bit odd. Almost like when I had TIA's. Keeping my fingers crossed.

[jules69 in reply to KathrynKathyKate]

Whilst on Rivaroxaban did you suffer depressive episodes?

[KathrynKathyKate in reply to jules69]

No

[jules69 in reply to KathrynKathyKate]

not sure if its the medication or if its part of hughes or not at all related

[jules69]

Thank you for your reply. I have raised this question with my specialist and whilst there is no reversal agent, if you are admitted to hospital they can successfully treat you there, ok it won't work as quickly as a vit k injection, but they can do it

Am not getting symptons similar to TIAs and having gone through a year of being admitted to hospital with ruptures due to Warfarin - this is the best medication for me at the moment

[rlupus]

Hi Jules69

I was put on Rivaroxaban 2 weeks ago i was sent to cambridge and see Trevor Baglin who is head of haematology , He said as my INR is all over the place and has been for many years he thought it was well worth giving it ago i was very unsure as i keep hearing its still unlicensed but he said it was total rubbish , i am at my wits end i did go onto to it but after day 9 my leg swelled up and was very painful red and hot so i went to GP and he has stopped it and i am now back on warfarin. I am due to go back to cambridge this thursday i am dreading it as i did call him with my symptoms and his attitude was i don't believe its the Rivaroxaban!!!

So i will have to see what he wants me to do but i had side affects of pins and needles ,headaches, and stomach cramps, since stopping i feel more normal (hat ever that is with lupus )

Any way it may work for you good luck just watch out for side affects you maybe one of the lucky ones and it may suit you.

[Lure2]

Hi rlupus,

You have answered on a 2 year old post now.

I know you have Lupus. I can nothing of Lupus as this site is mainly for APS, but many on here have also Lupus.

Is Trevor Baglin an APS-Specialist? Do you have APS also as you were on warfarin recently but the INR were all over the place so the he put you on Rivaroxaban instead with negative effect.

Your GP took you off it and returned to Warfarin,

When you are seeing this Doctor you must tell him that Rivaroxaban did not work and that you again are on Warfarin by your GP.

As you are not stable on warfarin you must either have some other alternative or a selftesting machine (like I have).

I am not a doctor and I do not know if you have both Lupus and APS so it is very difficult to help you.

The main thing is that you must now be well and proper anticoagulated. Tell him that you have got your symptoms back and it is not "rubbish" (as he says) at all what you tell him that Rivaroxaban do not do the job.

I have heard that Rivaroxaban is not licened yet for APS! I guess that this Doctor do not know APS.

Please tell us how it goes on Thursday!!! Also have selfconfidence now. We have to fight for our health. You are not alone. We are here for you!

Kerstin in Stockholm

[rlupus in reply to Lure2]

Hello Kerstin

I have only just seen its a 2 year post but it came through my email so i clicked on it,

Anyway as you can guess i am very down at present with all whats been happening to me , i am just thankful i have a great GP, he was very surprised when i went back to see him to say i was put on that new drug. i did have a self testing INR machine that cost me £400 unfortunately i was getting 3 different readings a day so was told its was not reliable enough for me so i have to have bloods taken twice a week at my doctors. I have bad reactions to clexaine injections so if i need heparin i have to be admitted to have IV heparin.

As far as i no Trevor Baglin is a APS specialist but i will check on thursday now as i am thinking maybe he is not i was just referred to him as my local hospital do not no what to do anymore.

My INR goes up and down all the time and i don't had any answers why! i wish i did.

I am now on my 3rd portacath as they keep getting blocked and infected this last one i have in was only just done April 17th this year, unfortunately every time its being used i am becoming very unwell with shivering shacking , feeling very flu like symptoms and then drained for 48 hours after so have been told this one needs to be removed so you can imagine i am very down as i have to go through it all again.

sorry for the rant but so fed up with life at present x

[Lure2]

I hear that you are really fighting. Good that you have a reliable GP who wants to help you. He sounds very interested.

I have not heard of any selftesting Machines with give different readings. I have an Roche CoaguChek XS. I have not tested severel times the same day and I guess it can differ a little. Could you not talk with the producer and get it fixed or get a new proper one? I test every second day. Perhaps it is the portacath and infection that makes it so diffucult for you to have the INR in range.

I understand that you feel down just now. I do hope you will be better soon and also have a Specialist who understands your problems you have just now and especially APS.

I send you good wishings from a sunny Stockholm! Please keep us updated!

Kerstin.

[Jonr]

Hi . I would like to listen to that, the link is not working anymore, is it still there ?

[Jonr]

Thx look forward to listen. I got my second 12 week test back this week, confirming I have APS, need to learn a lot..