Hi all, newbie on here but not to Lupus or Hughes syndrome! In addition I have another clotting disorder ( reduced activated protein C) Warfarin became unstable about 4 years ago and management changed to daily heparin injections. What I would like help with is information on the alternative medication Rivaroxaban.... any views please?
Thanks
Hi, you need to discuss this option with your Haematologist as not all patients are suited, and if your injections are working well that may be your best option. I think Hidden has some pretty good advice on the detail with this. I know from reading on here that some have done really well on it and others have not got on with it, I guess it shows how different we all are. MaryF
Thanks for your comment Mary, actually had a discussion with my haematologist today and advice was to read the research and left the choice up to me. That is why I thought seeking other people's advice would help me with the 'small print'.
Hi
Here is a paper about the trial done in the U.K. My understanding is that it's suitable for patients who have had venous clots only and require an inr of 2-3. Many APS patients (myself included) have arterial clots and need a higher inr and this has not yet been approved for this group of patients. However some individuals still use it as everyone's circumstances are different.
thelancet.com/pdfs/journals...
Good luck
Kelly x
I have been on Rivaroxaban about 2 years now and have had no problems. I went through the Warfarin (unstable) Clexane (developed clot) and changed to Rivaroxaban. I see Haematologist every 6 months for bloods and check ups. I also have an Apirin daily under his instruction. For me it's very convenient-no food issues or dose changes just take it every evening after dinner. It does need to be taken at the same time each day for best benefit.
Thank you for your reply.
It is encouraging to hear success stories and I am glad Ozchick that things are working out for you.
I suppose the difference is although the actual process of taking daily injections can be unpleasant the upside is I have been stable for the last four years and that has given my confidence and lifestyle a much needed boost. Had I had yet another clot whilst on Clexane I am positive my attitude would be very different.
Faced with changing what is working for the convenience of oral medication that comes with unquantified risks? I think I might sit it out for awhile.
Thanks again for your input.
Julie
APS not fab, do you inject every twelve hours? Trying to learn here. Thanks, Cindy in NJ
Thank you very much for your reply. It does make sense of what my haematologist was NOT saying yesterday.
For background to my situation, I have recently moved to Scotland so this was my first appointment at the hospital, so have yet to build a rapport.
The only stand ho took was that returning to warfarin would most likely be unsuitable. He also mentioned that for APS patients the INR test itself was unreliable (which was news to me) especially as I have had unpleasant "events" whilst supposedly medicated.
He left the decision to me and gave the reference for the report you mentioned ( which in and of itself was curious..... the medical profession has yet to fully embrace patient empowerment in my experience..).
I think on balance I would rather play safe, he did remark that the worse that could happen on Rivaroxaban would be another "event" and it would be a simple matter to revert back to heparin. Easy to say ,but I am not at all sure that I am able or willing to chance that outcome.
Thanks once again, I shall keep a close watch on your site for any future developments.
Julie
I knew you would have the finer detail Hidden ! MaryF
APSnotFab, your réponse is like a breath of fresh air...
I left the session bemused more than anything, slightly flattered I was being enabled to make a decision and confused that direct advice was avoided even when I attempted to put him on the spot.
My last "event" (can't abide that term) was TIA whilst in hospital, the surgery team failed to follow the warfarin/heparin protocol set out by my haematologist and that was the result. I can honestly say that his casual remark of the "worse thing.." disturbed me a great deal. On the positive side I was seeking out advice from the internet as soon as I got home so the silver lining is I found your group!
I am aware of the cost issue but you would think that the negative consequences should be taken into account, for example I was an impatient for an additional 10 days, wonder how much Clexane that would have bought ?
Hi Julie.
I agree with my colleague, Mary.
I'm also not the right person to answer this one, as I am on Frgamin injections.
Dave
Thanks anyway Dave. Actually I have been deeply impressed by the quality of the responses and can't thank you all enough especially the in depth knowledge displayed by APSnotFab.
Thank you Julie that's nice to know.
Hi Julie! In the 1990's I knew I had clotting problems but APS was not definite diagnosis at that time. I tried low molecular weight heparin for one month without feeling better. Then I had a trial on Coumadin and once I got my INR consistently above 2, the trigeminal neuralgia was resolved. Turned out it was due to jawbone damaged by sticky blood not nourishing bone. Caused avascular necrosis in jawbone due to ischemia. Nancy
Sorry Nancy, looked it up, I am surprised at myself that I didn't know Coumadin was a brand name of Wafarin....... never to old to learn
Goodness me Nancy that's sounds very painful. Have you had any problems since or has the Coumadin continued to control your condition?
By the by I was diagnosed in 1996 sounds like I was in the 'lucky' half of the decade... Also I have never been offered your medication
Is your dose 1mg per kg then?
For 8 years the jaw pain was so horrible I thought I would lose my mind. I was skeptical that Coumadin could help, but it did.
Those if you who take fragmin, how often do you take it? Here we take lovenox every 12 hours. I wonder what is the difference. Nancy
May I ask what your dose Is?
Thank you, I am going to another specialist tomorrow, don't know if I can or will be switched! I am hoping
Clexane dosage is weight related (amongst other factors)
Hi, I was unsuitable for warfarin, so was on clexane, clopidogrel and asprin daily for 8 years. I have a arterial clot in my subclavian. I changed to riveroxiban last April, still on clopidogrel and asprin. I was outside the protocol but have total faith in my consultant and being monitored regulary. If I didnt have this trust I wouldnt have switched - she knew how my APS effected me & treated me individually.
I wouldnt change if I was you until you have a relationship with your new docters and until trials for the drug have been carried out further on arterial clots.
Thank you Holly, I agree with your assessment, before I had quite an open and honest relationship with my haematology consultant, but this new chappie is quite different. It takes time to build up trust so I think change during the current uncertainty is, as you say, unwise.
Thanks for sharing your experiences, through the various posts I am beginning to grasp the issue better, and as they say, knowledge is power....
Sounds like you are in good hands, best wishes, Julie
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