Lifelong Rivorxaban for APS

Hi all, I'm new to this forum having been diagnosed with APS by the wonderful Professor Khamashta at London Bridge 2 weeks ago. Briefly, my background is: history of blackouts/fainting for 20 years, became pregnant in Jan 2014, developed preeclhowever lying 29 weeks and then gave birth to low birth weight stillborn daughter at 29 weeks, followed by suspected DVT and multiple bilateral pulmonary emboli.

I went to see Prof Khamashta as the NHS hematologist was planning on stopping my warfarin therapy after 6 months so they could do the Lupus Anticoagulant test.result doa2 and Anticardiolipin were undertaken whilst on warfarin and were negative, however the LA teat came back borderline but was unreliable as I was on warfarin at the time. The idea of coming off warfarin terrified me as I was convinced I had APS (long family history of DVT on both sides also.) Prof Khamashta undertook my LA test using the Taipan Snake Venom Time test which came back positive with a result of 1.16 - the reference range was up to 1.14.

I have two questions if anyone is able to help - I have been diagnosed as APS, however would like to know does a result of 1.16 on my LA screen mean that the antibodies, whilst positive, are in the "low titer" category? does anyone know how 1.16 compares to others on this specific TSVT lupus anticoagulant test?

Also, I have read that a lot of people are saying rivoroxiban is not yet recommended for APS however professor Khamashta has recommended this for me for lifelong anticoagulation and says this what patients are prescribed now instead of warfarin at St Thomas'. I trust prof Khamashta, but am concerned about what other people are saying? I have been on warfarin for 7 mths (currently 9mg daily) and my INR has fluctuated somewhat but now tends to float around 3.0 (well, has done for the last 2 months). I was happy to go on to rivoroxiban but am wondering if I ahould now stick to warfarin and buy a coagucheck machine so I can self test?

Also, statistically, as I am only LA positive (and negative Anticardiolipin and Beta2) does this mean I am less likely to suffer recurrence than someone who test positive in all three tests?

Looking forward to the Patients Day in May and will no doubt see many of you there. Thanks in advance, Lucy

11 Replies

  • First of all Im so sorry for your loss.

    In my eyes a positive test is a positive test and many of us don't even manage that but still are dx with the condition if we have other symptoms and a history of clots.

    If Prof K has dx you you can be sure he is right! Also the trials at St T have been on going for quite a time and quite a few selected patients have been put on the new oral drugs now so if he has selected you for it Im sure its in consultation with the other Dr's and its safe to be on it. Id not worry and enjoy the freedom that it brings you!

    Many people only test positive to one of the tests and you do not have to test positive to all three. Also Im not sure that it gives any reliability to any predictive measure on what will happen in the future. Obviously the higher the antibodies the worse things might seem so the fact that yours are not too bad may be better as its a reflection on current inflammation (thats what antibody count is).

    You are very lucky to be under such a good Doctor so I would try to relax a little and see how things go. We are all here to support you. x

  • Thanks for your reply, APsnotFab. Professor Khamashta is indeed fabulous and I don't doubt the diagnosis one jot - I was strangely relieved to have been diagnosed as I had strongly suspected I had APS.

    Ahh ok I understand the antibody count better now, so this is why levels can fluctuate - because it is a representation of inflammation at a particular time? Thanks for clarifying that - it makes sense!

    Yes, I think you are right about rivoroxiban - I suppose there is always an element of anxiety when switching medication but you are right that I should try not to worry and just enjoy the benefits. I can always switch back to Warfarin if necessary for any reason.

    Thanks once again - it's all been a bit of a white knuckle ride for the last 8 months but I've recently realised that there won't, in fact, be an end to all this and I just have to accept it and do everything within my power to optimise my own health.


  • I have a similar history to you, trust in Prof Khamashta, he is undoubtedly the best person to help.

  • HI, welcome, sorry for your loss and troubles to date, you have had a great detailed reply from my colleague APsnotFab, I echo what she has had to say. Prof K is one of the best and many of us are lucky enough to see one or other of the team at the London Hospitals, I hope you continue to improve and also do please use this forum as much as often as you wish. MaryF

  • Hi, I am one of the trial patients from St Thomas' and felt I must reply.

    I am an APS patient and sadly lost a son at 22 weeks, back in 2003, due to APS, but at the time I did not know that this is what I had. I feel very blessed to have had my diagnosis not long after and then with amazing care and support I have gone on too, have two successful children. ( It wasn't without its issues though but worth it) I then had a DVT 8 mths after my first child, which then meant being told to go onto Warfarin for life. I put myself forward for the trial as I am only 43, wanted to do a little to give back for the support I have had over the years, but also because being a working mother of two, getting blood tests all the time was a nightmare for me around work. I am now on Rivoroxaban since last April and all has been great so far. It has been a weight lifted to not now worry about my INR and medication levels. The team at St Thomas' have been thoroughly supportive and recommended the switch as my INR has always been between 2-3.

    I hope my post helps you but I would suggest reading all the literature around it and I would be happy to answer any questions you may have.

    Good Luck !

  • Thanks so much for posting. Sorry to ask - were you on warfarin when you had your DVT after your first child? And did you have any clotting events with your second child? Thanks again!

  • I'm also on Rivaroxaban and it does away with the testing. I think (if it's the same in UK as in Oz) some people were getting confused about the trial-thinking they were guinea pigs using this med. My haematologist did explain it's been around for some time but not authorised for use in APS. This means we would pay the full cost of the med each month (around $95 rather than a subsidised cost, for certain criteria). However, here they are finding it useful after hip and knee surgery and have broadened the criteria for subsidy.

    I also saw the lovely prof K last year when I was there and he was happy for me to stay on the Rivaroxaban and an added aspirin.

  • Thanks all for the time you've taken to reply - it is much appreciated. Just to clarify, I am not one of the trial patients - I was given the choice between Rivoroxiban and Warfarin by my NHS Hematologist when I first started anticoagulation (before APS was diagnosed) and have again been given the choice again by Prof K now that APS has been confirmed. My confusion came from reading on here that people believed it was not authorised for use in APS - whereas I have experience to the contrary?

    I understand the differences between the two and the benefits and risks associated with each, it therefore just comes down to me making a decision (something I struggle with in every day life! :) ) I am interested to know, of those who have been on both medications for APS, if anyone prefers Warfarin to Rivoroxiban or vice versa?

  • Hi, no I wasn't taking anything at the time. But it was due to having Aps, and having the DVt, that they then recommended the warfarin. I obviously had to take it due to the DVt, for a time. I remember not being convinced so researched it more with at at Thomas' who ran more tests but it was down to their advice that I started taking it. Everything was ok, I switched to heparin and asprin during both successful pregnancies and during my 2nd pregnancy I had a suspected dvt again, same leg, at 5mths. I then had to go to higher heparin levels, which meant natural birth/ epidural was out of question. It felt like a medical minefield so in the end as i felt more managed, I had a c section under General anesthetic. ( my first was a section too, but not due to condition) then served back to warfarin about 6 wks after giving birth.

    I have actually felt great on the rivoroxaban, more so than warfarin. And that I feel more in control as can eat, drink and take antibiotics if required without worry of inr all over the place for weeks. Plus no more chasing unhelpful blood test timings as not much out of working hours possibilities! Plus in surrey you can't take bloods on a Friday either for inr,working mum nightmare. Please do not read me wrong, my health comes first but given the amount of people who are on warfarin, there is not much thought around working people. Sorry rant over, therefore I would go for Rivo.. over warfarin. But do carry a tag to tell people just in case you were in an accident and make close friends and family aware too of what you cannot be given and what you are on and why. Note- you still cannot take any ibroprofen products or asprin with it either. Hope this all helps. Oh one last point, the RAPS trial that I was on, I believe was to test for APS patients, for the UK to get NICE approval. They have now approved its use in the UK for APS patients and professor hunt at st Thomas' even helped support me in getting my GP to give it to me and wrote to the Head Pharmacist of surrey. But do check as I am sure you had to have an INR of between 2-3. Let us know what you decide. Good luck A.

  • Thanks so much for that - it gives me hope! I have to admit that I am terrified of falling pregnant again but hearing your story really helps. I had a CT scan yesterday which showed all the clots have disappeared, although my INR was 1.8 so I think Rivoroxiban is definitely worthwhile for me, my INR has been pretty unstable over the last 7 months.

    I guess I'm worried that they will put me on the preventive level of LMWH whereas I would rather just go straight onto the therapeutic level should I fall pregnant again. I'm not a lover of taking drugs but the fear factor of another late still birth, placental abruption, and DVT/PE is too much and I would feel more comfortable with the higher dose, but we will cross that bridge if and when...!

    Thanks for clarifying about the NICE approval - that was my understanding but I kept reading that it was not yet approved which must just be out of date literature.

  • Completely Echo and understand your fears, was the same here and going for every growth scan was petrifying even though I may have heard strong heartbeats, but sure with right care and advice, they do do everything they can to go for successful outcomes only problem is We never truely know our own bodies !

    Good luck with everything! And happy to look out for any more questions you may have. Stay strong !

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