rivaroxaban And APS.

[Ally7]

Hi.

Can anyone tell me if they have been taking rivaroxaban at all, for APS?

How have you felt on it and has it improved your health?

And is there an antidote to it now and is it approved for APS now?

Thanks in advance! Xxx

[HollyHeski Administrator]

Hi, I have been unable to take warfrin so have been on clexane for over 8 years. I started a trial 6 weeks ago, I was put on the highest dose 30mg daily, I have not noticed any changes or side effects-in fact no changes at all, which is great, no more daily injections!!

I am now trying 20mg a day (but reassured that if any problems with my bloods can return to higher dose).

Early days but def. Worth trying. Im also on clopidogrel & asprin.

Did ask about antidote-not yet but they are working on it. It only takes 24 hours to get out the system, same as the clexane. In an emergency there are things they can do to help clot again.

Not sure if available for all APS patients, I have been categorized as 'unstable' APS, I am under St Thomas's.

Hope this helps.....

[stargazer5761 in reply to HollyHeski]

hi I have been on rivaoxaban for 18 monhtes now and no problems at all , I was put on it after second p/e , and touch wood no more clotting events . I m just going for some dental surgery and have been told by surgeon to miss one dose , so be 24 hours off rivaoxaban , and can start 5/6 hours after surgery ,, I m having problems with aches and pains and fatigue , driving me crazy and interfering with m y life ,, hopefully get some answers soon as to what it all is

[Tammylola2012]

Hi- I was on rivaroxaban for awhile with my second clotting issue. I had such awful pains and aches while on this med that I felt like I was 84 instead of 44. I went back to Doctor and she did ANA tests to make sure nothing else autoimmune going on then changed my medicine to Eliquis (apixaban). I have had no issues with this thinner. I feel better now than when on rivaroxaban. They are supposed to be working on a reversal for these 2 thinners now and heard they are close to remedy. I know Pradaxa already has reversal but many have gut issues with this one. Rivaroxaban and apixaban have been approved to treat blood clots but not sure about approval for APS. Everyone is different when comes to meds and if rivaroxaban is working for you then so glad you found something that works.😊 Best wishes and stay healthy.

-Noelle

[Ozchick]

I've been on this for close to 2 years now. Unstable INR's, DVT on Clexane (after 12 months) then changed to Rivaroxaban 20mg + 100mg Aspirin. I've been pretty good with only the odd joint pain that lasts anywhere from a day to a week. I walk every day and have to say this is the best I've been for a long while. I did have to stop it for a dental extraction (stop 24 hours and resume 6 hours afterwards) and for 36 hours before a colonoscopy/gastroscopy. As there was no bleeding and only a tiny benign polyp removed I was able to resume straight away.

Much easier when traveling, especially for a few weeks (Those boxes of Clexane only hold 5 days worth when injecting twice a day and are mighty bulky in the luggage!) Although not strictly approved for APS, Haematologist told me last visit they are using it more and more for various ailments and also long term.

[kittymum78]

I tried it but it didn't suit me and after 3 months they took me off of it; but as with all these things it's different things for different people. It was lovely not having to have my blood tested every couple of weeks but I was feeling really ill by the time they switched me back to warfarin. Hope it works well for you.

[Ray46]

Access to rivaroxaban and other NOACs depends on where you are and who your doctor is. My info is from about 6 months ago when I was trying to get them, or at least get a choice of anti-coagulants. I believe none of the NOACs are - yet - licensed for treating APS, so you will need to doctor who is prepared and willing to go "off label". I found there was disagreement between my doctors on whether or not NOACs actually work for APS, Neurology said go see Haematology, Haematology said ok if you really want, then called back later that day (probably after having be reprimanded by boss?) to say "no you can't they don't work you have to have warfarin", Rheumatology said yes they do work but the trials aren't published yet so it's not official.

In the UK, NICE guidelines are also an issue, NICE have a wonderfully contradictory guidance on anti-coagualtion for "other conditions" (of which aps is one) where they state that: (a) they have not issued guidance AND (b) NOACs are "not recommended" AND (c) guidance can be obtained from a haematological society document on... warfarin. So, there is no NICE guidance but if you follow the guidance that says there is no guidance the (only) answer is warfarin. Nice.

From my personal research one of the main differences (aside from the warfarin variable dosing risks and having to test INRs) is a much lower risk (and lower severity) of bleeding to the brain with NOACs, compared to warfarin. That is counterbalanced by a (less significant, but still there) increased risk of GI tract bleeding on NOACs. However, no doctor I have talked to could (or wanted to) tell me that, nor could they correctly give me my risk on warfarin - quite possibly because they were all focused on telling me warfarin was the only option.

The antidote thing is a red herring (the doctors just like to talk about it to make warfarin seem better). Even IV vitK is not instant acting and doesn't fully reverse warfarin for 24hrs - rivaroxaban will have naturally reversed itself in that time (just don't take another dose). Anyway, if it is that serious, you probably haven't got 24hrs, so in the meantime you will need PCC (or maybe FPP) - whether you are on warfarin or rivaroxaban.

If I had been able to get a choice of anti-coagulants I would have tried Rivaroxaban (or other NOAC) first, purely because they are easier to manage and to go on / come off.

[RebelinIdaho in reply to Ray46]

Well said. I am a pharmacist practicing in the US and currently taking Xarelto 20mg daily for APS. I have studied this extensively as I have had 5 DVTS, 2 PEs, and just now my third TIA that I can remember. My haemotologist is great and we agreed on "off-label" xarelto use instead of warfarin with a target INR of 5 because I'm so young (41yo) and play sports with the real possibility of high speed impact with stationary objects. He initially wanted me to quit all fun/dangerous activities liking skiing and rock climbing and start warfarin. When I offered to compromise and buy a helmet he decided xarelto (rivaroxaban) was a better choice.

All that being said I agree that xarelto, eliquis, or the brand new one coming out in the US whose name i can't remember, are better than warfarin for the reasons you described as long as you tolerate them. Especially the consistent anticoag effects that you get with them and the lack of dietary concerns that can cause fluctuations in warfarin.

Lastly, and this is pure speculation on my part (hopefully informed speculation after all the money I spent on my doctorate) but I think that while none of the anticoag drugs address the underlying problem with APS and that clots will still form, hopefully these microclots stay just that. It seems logical that with an anticoagulant on board a microclot might not progress and the damage might be minimized. Hopefully what might have become a stroke is resolved at the TIA stage and what could have been a DVT/PE requiring hospitaliztion remains just an inconvenience soon forgotten.

[Lure2 in reply to RebelinIdaho]

Hi Rebelinidaho,

Did you have your TIA when on Xarelto?

Did you have your neurological symptoms like inability to stand, difficulty speaking, memory loss, confusion etc etc when on Xarelto?

Kerstin in Stockholm

[Lure2 in reply to Lure2]

Hi again,

I would appreciate very much if you could answer my above question from yesterday.

We learn so much from eachother on this site where we also try to help with facts about our own "HS-story".

Do you still have those neurological symptoms you describe on another post and ask me about? What anticoagulation did you have at that time. Was it an oral drog or ......?

Kerstin

[molly1969]

Hi Yes been on riveroxoban for a year now and it's for my aps I have been very lucky as after 2 strokes haven't really suffered any complications that everyone else has had. But as to quality of life being better. I hold down a strenuous job. And apart from being tired alot have never really had any problems with warfarin or riveroxoban.

[HollyHeski Administrator]

Hi, when I was on warfarin my INR had to be between 3.5-4. I've been on clexane for over 8 years because of other probs with warfarin. Professor Hunt has now prescribed me with riveroroxaban, who I trust completely. She wouldn't put me on this if not proven to be the right drug for me. Few years ago she said as my APS was unstable she couldn't put me on any trials, I am now on the highest dose of 30mg a day, I have seen no difference to my health.

I think it depends on all your health problems and who your doctor is.

[Wittycjt in reply to HollyHeski]

Have you had stroke(s)?

[HollyHeski Administrator in reply to Wittycjt]

Yes, prior to diagnoses, 2 cvas & many tias. Also have blood clot in my right sub-clavian, which they cant remove.

The rivaroxaban only replaced the clexane, Im still on asprin and clopidogrel daily.

[Ally7]

Thank you very much for all your help. You've been great. I will take it all into consideration.

Thanks again.

Ally

[Bloodredroses]

Ally, even 3 years ago your post, I thought would reply if it helps somebody . I had a small clot in lung a year ago then APS diagnosis . RIVAROXABAN 20 mg , I felt great on 10 mg before APS diagnosis but 20 mg is it . Saw APS Specialist 6 monthly review at UCH . She said I am tolerating it well but TAKE WITH FOOD ! plus she said take earlier than evening in my case as reflux . I have .

She said on results RIVARX is efficient tolerated . The reversal is available in USA , but still not in UK. NHS budget?? The APS Prof said to not be alarmed . I said I am . She said well if you don’t take for 24 hours it’s affect stops. ( true ; I stop 24 hours before oral hygienist gum cleaning dental procedures involving cutting . For any planned operations , definitely must inform that Surgeon and get RIVARX plan from

Haematologist well beforehand . DO PURCHASE OFF EBAY OR AMZN AND WEAR ON EACH WRIST THE SILICONE MEDICAL ALERT WRIST BANDS , that display MEGICAL ALERT taking Rivaroxaban . Both wrists . So in case of accident, PARAMEDICS KNOW IF ONE IS BLEEDING , not to give ASPRIN ETC . Plus why the blood is fountain. the medical alert wrist bands available in all bloodthinners . Not so common in UK . In USA very very well used . For all medications in case of accident / hospital . Strongly reccomend .

My heamatologist said “ what a great idea” where did you buy?” Now that’s a sign of how not well used/reccomended . Older Warfarin users seem to wear them . Maybe for youngies “not cool “ . I cut my foot deeply and it was like a murder scene . 4 /5 hours , ice and Vaseline , compression it stopped . I googled it . Wasn’t going to A & E for it , not an artery not pumping out .

You shouldn’t eat grapefruit and too

Much blood thinning foods (alcahol)

Or too much clotting foods high in vit K. Google all That with Rivaroxaban or any bloodthinners . Just eat some dense protein chicken oily fish etc foods when you take it, avoid harsh affects on stomach . Take with food . I find RIVARX ok , can forget about it generally . Test kidneys by G P regularly and iron levels .