Sticky Blood-Hughes Syndrome Support
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Query about Warfarin version Rivaroxaban

I have heard from a good source that it's the intention to move patients who take warfarin onto Rivaroxaban . I query this is suitable for patients with APS, and has there been enough research. It concerns me that this is all about money. I know someone who has APS who has been changed to Rivaroxaban, and at the moment not well.

The main source of information came from the medical profession, and was told all patients on warfare will be changed over. What has happened to what's best for the patient.


16 Replies

I can imagine that might be a long term aim - rivaroxaban is certainly a lot easier to manage (at least it was in my experience). I'd be skeptical if every APS patient was switched, certainly without request from the patient themselves.

As far as my understanding is, warfarin is the cheapest option, and has decades of research behind it in a wide variety of cases. Rivaroxaban has only been licensed a few years and I wouldn't have thought that it's been verified as effective in the same number of kinds of cases, so pre or post op, general management, In cases of either recurrent clot or recurrent bleed etc. Has the antidote even been licensed by NICE yet? I don't think the majority of trusts or practices are particularly keen on eschewing tried and tested warfarin for a newer drug with more known unknowns.

I could see it being possible that a practice or trust has been approached by Bayer and incentivised to 'push' Xarelto on APS patients, but I would be very suspicious of the idea that all APS patients would be switched en masse. I would say that would be failing duty of care and the potential cost to the health service of patients admitted to hospital with clots or bleeds due to misprescribed medication should outweigh the financial benefits.

Not a medical professional though, so all speculation on my part.


Hi, I have been offered the opportunity to swap by St Thomas in 5 months (next app) and it was explained that there seems to be no more bleed risk than on Warfarin from the extensive trials and that it is more 'controlled' than warfarin.

As I currently see it:

The pros are you are less likely to have variable clot risk or be diet or general health affected compared to Warfarin and it has a 'cleaner' window of efficacy, ie you are 12 or 24 hrs covered. You need less doc visits as INR is not relevant with the different mode.

The cons are they do not have an antidote yet (I was told this is coming though) but the window efficacy makes this 'manageable' at present. Not everyone can take/accept it. You will probably be set to 3 to 6 month review appointments once settled, some may feel the need for more regular monitoring/doc interaction for peace of mind.

I am going to try it, see how I get on.


In Australia the full cost of Rivaroxaban is $94/month vs around $10 for Warfarin so I can't see it as a cost issue. I was changed because i couldn't keep a stable INR with Warfarin and developed DVT with Clexane. It is certainly a "set and forget" med compared to Warfarin but many people coast along quite happily on Warfarin and I can't see they would change this.


Hi there. As I understood Prof.Beverley Hunt said at the APS Patients Day, that the

Warfarin alternatives, NOC's are not trialled for those of us who have to keep an

INR between 3-4. Apparently APS patients with a range of 2-3 are suitable. I guess

the costs would relate to the work load on the coagulation clinics etc.not to the

cost of the drug itself, as Warfarin is very cheap.


I doubt it will include all APS patients and I expect that some who may want to move may not be eligible.

I have no intention of switching after my decades on Warfarin.

I understand it is subject of a long term study and that the study group subjects fall into certain parmeters, parameters that some of us fall outside of. For example, (and it is an example and not based on inside knowledge) it may be that the trial is for people who have a target INR between say 2.5 and 3.0 and with a certain history. As someone with a target of 3.8 to 4.0 I wouldn't be allowed in the subject group so any results would not be applicable to me.

The business of the circumstances in which any drug use is licensed is an interesting area . I suspect it is unlikely that any approval would be extended to patient groups not fitting the trial criteria.

The license issue can be quite restrictive in regard to use. I used to have Butrans patches and was on a dose of 30 micrograms per hour. I was only allowed to use a max of two patches at any one time so had to use a ten and a thirty even though three tens would have been easier. The makers had never trialled the use of more than two patches so their licensed use had a restriction of a max of two.

Hope that isn't too confusining!


We are still waiting for the official results from the RAPS trial in London. Recruitment was a success and when the trial steering committee next meets we should have an answer.

Soon hopefully!

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That's good to hear. I was concerned that patients was going to be changed from their medication, without the correct research,and NICE guidelines.


A few patients in the UK are already on rivaroxaban, but this is under the careful eye of their APS specialists and usually because they are intolerant to warfarin or simply cannot get their INR in range.

We don't have any NICE guidelines on APS at the moment and it's like the holy grail for us! I believe, the same applies to lupus surprisingly.

Following the meeting with Earl Howe and the Health Department, we were told that it is something we can pursue but only once there is prevalence data and enough research to provide the body of evidence.

Guess what we're working on ... :)

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Thank you for the above Kate. I do want to see more research on this drug. I have my suspicion that this is all about cost and not the patients well being. Patients need to be fully informed of this drug, so they can make an informed choice.


That's understandable Bernie. However, the NOACs cost a lot more than warfarin so it's more likely your CCG will want to keep you on warfarin than move you across.

I noticed last week that Anticoagulation Europe published an article in their INReview about the lack of fairness in the distribution of NOACs and they want to see a fair policy throughout the UK.

So it may be that they are not going to be offered to everyone anyway, simply due to health economics. We will have to wait until we have clear approval then see whether the CCGs give GPs the budget to move patients.

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Hi was put on this drug but i was told it only really covers you for the first 12 hours, i did give it a go but unfortunately after 9 days i got a blood clot in my leg as was advised to go back on warfarin, i had side affects to ,

i did ask the question could i take 2 tablets one in the morning and one in the evening but was told no .

so i have decided i am staying on warfarin until something else is offered.

Good Luck with it. i have heard it works for some people.


I am sure a clearer picture will emerge, it is still early days with all this, albeit in a climate of uncertainty! MaryF

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i am a supporter of warfarin, its is inexpensive and effective. i can no longer take it though, as i got to difficult to manage. so i spent a year on lovenox ugh, but now do take riveroxiban. it is easier, but yes cost more. its better than 2 shots a day.

as for whats best for the patient? anyone who is paying out of pocket for meds should speak up and stay on warfarin as long as they can be managed.


I've recently been diagnosed with APS following a bilateral pulmonary embolism in December. I was treated with Rivaroxaban then and have made the choice to take it now long term. The only side effects I have had so far is a heavy period (which is common with all blood thinners). My consultant was brilliant and gave me the choice having given me all the information I needed to make the choice. As an extremely busy person with a very active lifestyle I didn't want the disruption that warfarin would bring to my life. I'm not part of the St Thomas hospital trial but my consultant is in close contact with them. I'm also giving blood and urine samples next week for some clinical research into APS being conducted in partnership between the University Hospital of Wales and the Netherlands. I'm determined to stay up to date with the research with the aim of one day not having to take blood thinners for this condition!


I have been told by St Thomas that I'm not allowed to go on R as I have to keep my INR between 3-4 but my Haematologist in Hull was trying to puruade me to cange so I dint have fluctuations in INRS that I jave at present. Eventually I said no as I wanted to be in charge of by st Thomas and they were so amazed that he hadn't read their paper properly that they wrote to him to keep hands off and leave my treatment to them. So yes people can get it wrong and if I wasn't as strong minded as I am maybe I might have succumbed to doing what local DR thought best. So people do need to be aware and know that this is happening.


Glad you stood yo your guns. It amazes me how inconsistent the Doctors are. I always get them to copy the letters to consultants in London.


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