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Rivaroxaban

Being put on a trial of Rivaroxaban. Have done a little research and here’s hoping this will help me. Been told no INR testing etc. But cannot find much info to tell me if it is as effective as warfarin??

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Hi I can't comment regarding warfarin, but I am also on a trial with rivaroxaban as a substitute to clexane, been on it now for 18 mths. Also take daily aspirin and clopidogrel. (Have arterial clot and have had strokes).

Been really happy on it, occasionally nose bleeds and more bruising but no clotting episodes.

Are they taking you off warfarin and replacing with rivaroxaban?

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No. This is an escalation from 300mg aspirin.

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I don't know your clotting history - was it a Venus or arterial clot?

The RAPS trial - in our Pinned Post section on this page top right, states that it is only suitable for those with APS who have had a Venus clot and would need an INR no higher than 3.

If you have had an arterial clot and need an INR over 3 then it's not recommended at this stage as it's not yet been trialled.

This week an American doctor stated in a discussion that in his opinion no one with APS should be on any of the newer oral anticoagulants as they have not been properly tested.

Who is putting you on it and is it part of a proper study where you will be constantly monitored?

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It is my rheumatologist who is an APS specialist that has prescribed. However update this morning, my GP disagrees and they are now discussing whether it should be warfarin. They are going to call me and let me know when they have decided. Feel the division is going to be cost based however as GP kept talking about NHS drug costs as my rheumatologist is private. Not very re assuring that I will get what is best for me.

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Jules- please know you have a right to be consulted and be part of the process. You need to be happy about decisions that are being taken that will affect the rest of your life. Demand to be able to be consulted on your views, ask questions and then when you feel confident with which option you think is in your best interest then push to be allowed to have it. It will not be cost affective for your GP to put you on a medication which is either not suitable or you can't cope with.

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Thank you I will. Was just taken Back by the phone call yesterday as was at work. I had all the conversations with the consultant and thought I had an agreement but I will see this through.

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It's great for me. I've been on it for a few years after I could't keep a stable INR and then clotting on Clexane after a year. I also take 100mg Aspirin daily.

What dose have they got you on? I've had no side effects and am really happy and feeling well after a long time of never knowing what the next day will bring. I've had a few bruises from when the puppy gets a bit exuberant but even minor cuts don't seem to bleed as much as when I was on warfarin.

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They said 20mg and then test to see if it is enough. Hope I get there as sounds like it is working well for you.

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If you are transitioning from Warfarin/Clexane 20mg is therapeutic dose. If not then 15mg twice a day to get to this point after (I think!) 2 weeks. I went straight to 20mg after coming from Clexane. About 12 months ago I was in Hospital and didn't realise they were giving me only 10mg and I thought I was feeling rubbish because of the surgery I'd just had. Took about 3 weeks to feel OK again on the correct dose.

As far as I'm aware there's no test to see if it's a 'correct' dose and I guess it's a bit of a leap of faith to start on it. If it works it's brilliant-the only tests i have are 6 monthly bloods to check kidney and liver function as it can affect those. So far they have always been in normal range :)

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I have no personal knowledge of this particular drug as I am on Aspirin, and LDN plus a host of supplements, I know you have to fit the criteria mentioned above by Lynn. These are very new, these drugs, and I guess over time, beyond the studies already done, that patient experiences will be gathered. I hope your main Hughes Syndrome/APS specialist is monitoring your trial of this particular drug. MaryF

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It is the specialist who has prescribed and will monitor. If her and my GP can sort out their issues...

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It can be very difficult to be on Warfarin if you are also Lupus Anticoagulant positive. Not all Specialists know how difficult it can be if we do not manage to keep the right INR.

We need to selftest and have a Doctor who admits ut to get enough with testingstrips as we need to test our blood rather often (especially at the beginning) to be sure that the DIFFERENCE between the machine-test No in the finger and the vein-test No at the lab is THE SAME.

I have to withdraw perhaps 1.0 from the fingertest No to get to the real value that counts. That is the Vein-draw No at the lab that counts!

I have a Specialist here in Stockholm who understands and let me have all the precautions I need with several lab-tests and testingstrips. I have had all the antibodies in persistingly high titres since 2002 and been on Warfarin since 2011.

I hope not all are like me but you never know before you have tested and found out how your situation is.

Best wishes from Kerstin in Stockholm

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I started with Rivaroxaban a year ago and it seems to work for me. You have to be careful if you cut yourself or with the bruises but that happen wiht the other drugs too. I like it because you do not need control and made easy your life

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I have been on warfarin since 2013. In September I changed to rivaroxaban. I'd always been pretty stable on warfarin but changed as it seemed easier overall with no monitoring etc.

Unfortunately it left me feeling pretty awful. For the two months that I was on rivaroxaban I was extremely fatigued and felt generally awful. I usually sleep for about 6 to 7 hours per night but I was permanently tired and couldn't stay awake. I had no energy at all and could have slept all day long. I was also achy and generally just felt rough. I was put back on warfarin and the symptoms went almost immediately.

I'm not saying that this will happen to you but just want you to be aware that what is right for some people isn't right for everyone.

I hope it works out for you!

Brian

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Thanks. Good to know both sides. Sorry it did not work out for you.

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I have now been on Xarelto for three years now. I have not had any side effects and its so much easier than the injections of Arixtra I was on for two years. I have never taken Warfarin. I was allergic to Agatroban and Heparin, they both made me clot.

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Hi Coblondie13,

I wonder if you have been diagnosed with Hughes Syndrome/Antiphospholipidsyndrome today?

All of us here have HS/APS and that is the only thing we can relate to.

Best wishes from Kerstin in Stockholm

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I’m on Rivaroxiban and have been for some time - was on warfarin before and couldn’t get stabilised so was seen as an ideal candidate for Rivaroxiban - no longer have to get blood checked and have had no problems; still get the odd flare up (migraine-like headaches) but feel well most of the time. Have had no side effects that I know of.

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I am usually on rivaroxaban too - had been taking it for over two years after being unstable on warfarin for 6 months (LA positive). It has been brilliant for me and enabled me to live a normal life - I've had no problems whatsoever and things were back to normal!

I'm now temporarily on clexane whilst pregnant and breastfeeding but will be switching back to rivaroxaban afterwards.

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I’ve been on rivaroxiban for almost 2 years after Jugular vein DVT. LAC positive. I’ve really not had any issues with it although a simple cut will bleed more. Mum was on warfarin for 18 months after a stroke but had another stroke on it. I do get the occasional bad headache and is worse when I am tired. I do need a nap during the day from time to time.

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Hi Puska,

Jules 23 got a very good answer from APsnotFab who knows these things very well. I agree with her that if it were me I would not take Rivaroxaban as the oral anticoagulants are not enough proved for us.

You write about your mother that was on Warfarin and died from a second stroke when she was on it. I can understand that makes you doubt.

I think that she perhaps also had your illness (just a guess from me but it is very usual to go in families) and she might have had an INR not steady and high enough and that made the second stroke.

The Warfarin must be looked after closely but it is difficult with our LA-antibody that makes it erratic and unstable. I selftest every second day at home since 5 years and have Specialists around me who help and understand and I am so grateful. I wish you the very best!!!

Kerstin

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I too was put on rivaroxiban after a extensive leg dvt. I have been on it now 2.5 years and have the occasional double vision or flare up from time to time, but it has done very well for me. I’m just careful with the table saw.

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Hi bmiller,

Are you tested positive for all the three antibodies for HS/APS? Are you tested positive for Lupus Anticoagulant?

I do not like that you have double vision from time to time. I had those neurological symptoms before I was properly and stable anticoagulated with APS. Perhaps you do need Warfarin as Rivaroxaban is not enough for all of us as to arterial or venous clots etc.

I can tell you that after Warfarin with an INR around 4.0 I have no neurological symptoms. They are micro-embolies I am told (those neurological symptoms like doubleseeing) . Tiny but do damage in the long run. Please give it a thought!

Do test your Lupus Anticoagulant as that is not possible if you start Warfarin!

Best wishes from Kerstin in Stockholm

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I have tested positive on all three over the last few years since my diagnosis. Even though my Hemo will say I test positive, but I don't have APS. I think he means I don't have catastrophic aps, which I already know because I would be in bad shape if that was the case. I had vertigo, and headaches for about 20 years before I had the dvt and figured out what was going on. I do always talk to my hemo about new studies coming out as he was concerned about Xarelto not being approved for this condition.

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bmiller,

Hope you do not mind me saying this (it is for your own good) ;

Get yourself a Specialist who has treated people with autoimmun illnesses and especially with our tripple-APS before, who understands that we need Warfarin or LMW Heparin with the neurological symptoms we have.

Kerstin in Stockholm

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Thank you. That is positive, hope I get good results. I will be staying away from any saw’s regardless as am a walking accident waiting to happen with any power tools. 😂

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