Hi It's been a month or so since the results of the trial were published. Has anyone swapped yet and if so how are you getting on?
For me Warfarin is working just fine but I'm really considering swapping over, mainly due to the frequent INR trips out of work and diet interactions. I'm just undecided whether to speak to my GP or wait until my next specialist appointment in June next year.
Thoughts peeps?
HI, I agree with the advice given, by my fellow administrator, wait for your appointment but as you wait, gather the experiences of others on here, it will help you reach the right decision and your consultant. MaryF
That's the way I've been leaning tbh. Just need some people to reply with their own experiences of the changeover 
Hi i changed over the end of last year unfortunatly it was no good for me as my INR target is 4.5/5 as i have had so many PEs and clots, i had awful side affects to tried it for a month ended up with clot in arm so was put back on warfarin, Also there is no way of testing and as my INR is all over the place it was not very safe for me as there is no correction drug out yet,
Good luck with whatever you decide it may work for you as we are all very diffrent ,
Ta for the reply. I'm surprised they put you on Rivaroxaban as the trials where for peeps in the 2.5 INR range and if you look at the results it clearly says this is not for people with higher INR targets. Mind you that's the UK!
I have been taking warfrain for 23 years and manage fairly well although my INR fluctuates anywhere between 1.8 and 3 which is why my Dr recommended the switch to Rivaroxaban. Better the devil you know I felt so was referred to the specialist for some more advice. Have been told that yes Rivaroxaban is great but...trails have not been carried out on patients with APS therefore he wouldn't recommend switching yet!! I have another appointment in December but for now I'm happy to stick with my Warfarin, pain as it is going for my INR as I work full time but happy to do so until I know for sure it's safe to switch. My current dose of warfarin is 13mg daily.
I switched.
I was able to get my blood tests through work, but as I was due to be leaving through change of jobs, the uncertainty of where and when to get INR tests, coupled with my need to take a handful of warfarin tablets, meant switching to Rivaroxaban made sense.
Things to consider:
Nice side effects - no dietary interactions. I can now drink cranberry juice and eat grapefruit for the first time in 10 years...
No way of "knowing" it works - you have to have faith in the fact it just works if you take your daily tablet.
Easier to counter the effects for planned events: I had a day surgery a few weeks ago - stop on the day, have the surgery, start next day. No complicated bridging plans with heparin for a week before (although this will depend on the procedure & surgeon).
As to the lack of reversal agent, this to me is a very small consideration. If you're in an accident, a real emergency accident, how likely are they to be able to get to you quick enough to a) stop any bleeding, b) get from you or an alert bracelet or card that you're on warfarin to then administer vitK to counter warfarin to allow surgery? I discussed it with my doctor and we agreed the benefits of switching to Rivaroxaban outweighed the small risk of not being able to rapidly reverse the effects with vitK or equivalent.
It does still feel weird putting all your faith in the science and taking the tablet, with no back up check to reassure you that you're in range and therefore won't clot...
Hi ta for the reply. Don't quote me but I think the treatment for a massive bleed is the same as if on warfarin, something about giving blood plasma's? Best ask a qualified person about that though. Something that was mentioned at the Hughes patients day in the summer is they are working on an antidote so this may be another reason for me to delay the switch.
For me personally, the factors of when I might need it were true emergencies (I.e. car crash) and not to be fatalistic, I figured in that unlikely event, the emergency service having the wherewithal to treat an unusual anti-coag patient was slim. For others, they may need that certainty - if my granddad were on warfarin or rivaroxaban for example, he falls occassionally and it wouldn't be prudent to not be able to reverse it. Yes, in my discussions with Doctor, then Consultant then Doctor again, we discussed the progress in medication and reversal agents.
Hi MASuk10
I made the change 2 weeks a go. For exactly the same reasons as your thinking about, convenience. For me personally it's not a good drug to swap from warfarin. I'm seeing my doctor today to revert back to warfarin, which although the INR testing is a real pain, I actually felt pretty healthy taking.
Rivaroxaban has given me the most horrendous menstrual cycle, I couldn't possibly live my life as I used to if I had to go through this every month. Maybe this is an area especially for the women to consider.
Regular headaches, dizzy spells, and generally feeling pretty unwell, have been my experience, but I know others will tell you that they're having no such symptoms whatsoever and it works for them.
If it works for you it would be great to not have to go through INR testing and considering your diet quite as much, but unfortunately for me I'm going back to the drug I was symptom free for years taking.
Good luck with what you decide to do.
These are my worries minus the menstrual cycle Was it easy to revert back to warfarin?
It was really easy to swap to rivaroxaban, but it's not going to be quite as easy going back to warfarin. I will find out more details at my doctors appointment today, but I've read that I'll need to take the rivaroxaban whilst also starting warfarin again and have daily blood tests until my INR is in range. I would like to just stop taking the rivaroxaban, but I think there's a safety issue involved.
Good luck at the Docs and please do let me know what he says and how you get on during the change.
Hi MASuk10
Now having made the change back to warfarin, it was quite a straight forward procedure. My INR was checked, it was 2.4, perfect, so I simply took my usual dose of warfarin the next day, 14mg, and told to retest in a weeks time.
Mission complete, no more rivaroxaban, back to the old friend of warfarin! 😊
Warfarin takes a while (a week or more in some cases) to reach therapeutic levels.
Could it be an interaction between rivaroxaban and any other meds, that warfarin didn't?
I have been swapped well over a year now. I haven't had any problems as such. I still get a bit dizzy and triangles in my eyes like a kliedscope? I bruised really badly on warfarin. Keeping a job and no weekly appointments to nurse has been good. But I did feel better on warfarin. It's just my opinion. My doctors weighed all pros and cons for me.decision was outta my hands. Really I just get on with it. I'm not much help on your decision sorry but wish you all the best.x
I swapped 2 1/2 years ago, to Dabigatran, rather than rivaroxaban. I work for a GP practice and my own GP agreed that as I was useless on warfarin, between 1.1 and 2.5 on warfarin (fussy vegetarian) that we'd give it a go (Professor Khamashta was ok with this too). It agrees with me. I can eat and drink what I like (my only side effect is indigestion (only for my night time tablet - I just have to allow 15 mins for it to go down, then no issues. I'm lucky in the fact that praxbind is the antidote and came out last December, Dr Sangle (covering for Prof K) has just written consent for me to go diving (25 year wedding anniversary trip coming up to Barbados), he explained that I am probably very much more safe than many people who dive as I'm on my drug! But I suggest you make any changes with your specialists blessing. Good luck! X
Have those who find testing on warfarin a pain, have you thought of self testing?
Yep that's something else I may push for if i stay on warfarin. Last time I asked my GP though they were not helpful in the slightest. I think if the testing machines and strips can be provided on the NHS then the cost would be recouped with less of us yellow book people having to clog up the bloods waiting rooms!
The NHS won't supply the Roche machine, but they are a lot less expensive than they used to be. (Around £400, rather than the previous £800). My dad has AF and has self-tested for 15 years, (before my mum got Parkinson's they travelled round the world a lot) he calibrated his machine against his surgery one (we must calibrate ours every 3 months) the test strips can be an issue, but his surgery just did him a prescription every so often. I doubt they'd want you testing all of the time if the machine advised every 6 weeks etc, as the test strips are about £3 each, but many people do self test, and just call their GP to alter their warfarin if they become unstable, or if their inr changes. So it is a possible option.
As long as your surgery/CCG will allow the test strips you can go ahead.
I get my test strips on script and test every other day. My surgery quite happy with it but in last few weeks it looks as though my ANA levels may have changed and made the coaguchek readings a bit unreliable. Am seeing a hemo a view to going on to rivaroxoban but even if she recommends it after new updated tests, she will have a job to convince me. I'm thinking Daltepatin injections are looking like favourite. Warfarin has been a good drug for me for over 40 years.
hi!
My name is Ana and I was diagnosied this year with this problem (only 22 yearls old) so due to my short age , doctors prefered to start with rivaroxaban and it is almost a year since I started and for me it is a easy way to try to do normal life. You feel sometimes bad but thats the illness. In my experience it works good, i recomend it. I hope to help you. Kind regards
Ana
See my post above. I have been on warfarin for over 40 years and all has gone pretty well until last month or so. Was quite content on warfarin but issues on accuracy/appropriateness of coaguchek are causing a rethink. I self-test every other day and inject heparin if below 3-0 so surgery venous checks are totally impractical. My specialist has been in touch with St Thom's (who tossed me and hundreds of others out years back) and on their advice I am to see a hemo with a view to going on to rivaroxaban. If I test positive for certain specified tests (can't recall which) then I won't be suitable. I also think I am well out of the research group range, 70 early next year, past PEs, Tias, stroke and with a target of 3.8 to 4.0. In my case it is clearly not just a case of what you might prefer to be on, that there is a fair old degree of eligibility of suitableness to deal with.
I am half expecting to go full time heparin
I will not go off my Warfin for any inconvenience. I believe you should follow your doctors advice. My doctor absolutely will not swap it out for any other drug. He want me monitored. Hope it works for you...don't make the decision alone.
Lexi
Warfarin
Warfarin and Clopidogrel
Refusal to continue Warfarin prescription
Heparin to Warfarin Bridging
