Hi is anyone on here on Rivaoxaban as I am due to start it next month as an alternative to Warfarin

[AlisonT2]

I wondered if there were any side effects

[Hidden]

Hi Alison

Rivaroxaban has not yet been trialled for patients with APS, so is not normally prescribed. There is a study taking place between St Thomas', UCL and Imperial - the RAPS trial which is looking at this as an alternative to warfarin. So far, so good with much less cerebral bleeds than warfarin - however, you shouldn't really be prescribed Rivaroxaban until the results are made available (probably next year). I do know of a handful of people with APS who are already taking it - on the advice of an APS expert so I presume you are seeing a very experienced consultant?

[AlisonT2]

I am under Karen Breen at Guys and on my last visit I requested an alternative to warfarin as a year ago had a gastric bypass my eating still isnt good with my being sick quite frequently and loose stools finding it hard to stabilise my INR also starting a job next week (first time in 5 years) so dont want to have to keep running off to the warfarin clinic every couple of weeks. I still have to find out whether or not GP will prescribe as apparently they can refuse. Thank you for your prompt reply I didnt realise it was still in testing stages but I do have faith in the medical team at St T's and Guys so that is all good

[Hidden]

Karen is under the wing of Prof Beverley Hunt who is probably the leading authority in the UK (if not the world) on APS and anticoagulation, so you have nothing to worry about. I know Beverley has a few patients also on Rivaroxaban and she is also on the steering committee of the RAPS trial - I am too but in the capacity of the lay person. The patients she has started on Rivaroxaban are also either intolerant or struggling to deal with warfarin, as you sound to be - it's not the best drug, Beverley always says that if they tried to introduce it on the market now, it would never get through all the testing - but I'm afraid we're stuck with it for now ... but maybe one day everyone will be able to switch to Rivaroxaban. Good luck with the new job - hope you enjoy it

[Twigglet]

Hi, I started to take Rivaroxaban 2 weeks ago, previously I took Heparin as I was still breast feeding. I'm also under Prof Hunt / Karen Breen. No problems or side effects, in fact I feel like the old me. Good luck. Xx

[Hidden in reply to Twigglet]

That's really good to hear Twigglet - glad that you're almost back to your old self - it bodes well for the possible replacement. Hope it continues Kx

[AlisonT2]

That is soooo good to hear thank you x

[krysty]

Hi I'm fairly new to the medication thing and brand new to this blog, I was started on warfarin last christmas having had an undiagnosed dvt and subsequent PEs'..plus a diagnosis of APS. I have repeatedly informed my GP and warfarin nurse that I feel unwell with the medication, for example, headaches,memory loss, hair loss. At my last consultant appointment I was told that there is nothing currently on the market that is as effective as warfarin in the treatment of APS. It would be great to hear of other peoples experiences...My consultant agreed that he would check on me again in January 2014, if anything my symptoms are worse and I seem to attract every cough thats doing the rounds, so it feels like I'm much more unhealthier since starting warfarin.......oops am I alllowed to moan?......

[AlisonT2]

I too feel unwell on Warfarin and I did tell the nurse at the Warfarin Clinic and she advised me that there were alternative therapies and I should speak to my consultant which I did and have now been given the ok by the haematologists at Guys just waiting for the GP to return from his holidays and agree to prescribing after the initial 3 months that can be prescribed the hospital. And yes you can moan as much as you like people on this site (myself included) appreciate the need to sound off from time to time xxx

[Calico]

Hi, I tried Xarelto but it did not work for me so went back to arixtra injections (fondaparinux). Arixtra works really well for me but the daily injections are not my favorite. I so wanted the Xarelto to work but all my symptoms reappeared. Hope it works for you.

[AlisonT2]

Thank you x

[Hidden]

Hello Dave. Yes, warfarin is not suitable for a small number of patients and the doctors have struggled, in the past, of what to do in such cases. Injecting with heparin is not ideal long term as it can cause problems with the kidneys/liver and bones in the future, but it's been the only option until now.

We're all hoping that rivaroxaban will be the warfarin and heparin replacement in the future - obviously, heparin will still have to be used in pregnancies as no-one will ever want to try a new drug on babies.

Warfarin has always caused bleeds but one of the new drugs, dabigatran - (tradename Pradaxa) is now showing to be just as dangerous. It was being feted as the great panacea, but not so much now. I'm just glad the RAPS trial doctors obviously knew what they were doing when they chose to try APS patients with rivaroxaban.

I hope you continue to do well on it and there are no clots or bleeds.