Hi.
My GP rang me yesterday and wondered if I would be interested in going on to Rivaroxaban. I know this is one of the new drugs but I have been on warfarin for 13 years! She said it would avoid having my INR done and I would not have to worry about testing when we went away. But to be honest that doesn’t bother me as I've been testing for so long. I'm not one for change but is Rivaroxaban producing good results?
Thanks
Janekins x
Hi Jane
Not sure who your doctor is, but rivaroxaban is not yet approved for APS patients so, unless, they are one of the doctors taking part in the ongoing trials they shouldn't really be suggesting it for you ... yet.
I'm the lay person on the steering committee for the RAPS trial which is taking place in two centres in London, and the results should be available at some point this year. So far the results have been good so, hopefully, there will be a viable treatment other than warfarin soon.
Some GPs have been prescribing it for patients - particularly those who are warfarin intolerant and, again, there haven't been any reported problems so perhaps your GP either isn't aware that it's not yet approved, or has had some success with another APS patient? I would ring and find out her position before you switch over.
Kate x
Hi Kate
Thanks for your reply. Having the info from you will be very useful and I am sure my GP will appreciate it too. Is Rivaroxaban likely to be more or less expensive than warfarin?
Thanks again
Jane x
No problem Jane, and please do ask your GP to contact me at the Hughes Syndrome Foundation charity if they want to discuss anything.
Rivavoraban is slightly more expensive than warfarin (but nothing like the expense involved with heparin injections) and the cost will be offset by people not having to be monitored as the INR range is not applicable with this drug.
A reversing agent is being developed and should be available soon, but I will let people know the minute I hear anything.
Kate x
Kate
My Rheumy is writing to the Haem Team as my INR is all over the place and I haven't yet managed to go longer than 2 weeks between tests (started May 2013). He has asked if I'd be willing to give it a go, which I would, if good results.
I hope they give your doctor the green light. When your INR doesn't stabilise it can be a complete nightmare! Do keep me posted.
hi Kate and all , my I n r has been up and down for a few weeks now my test this morning was 1.7 my range is supposed to be 2-3 . I have felt really unwell for some time, so this morning after my test I saw my G P he was very helpful . I take warfarin for AF. which was diagnosed after my stroke 4 years ago, I asked my G P this morning if I could try a different anticoagulant he said as i have no heart valve issues I can take rivaroxoban, 20mg daily starting tomorrow . I hope it works . i have to have a full blood test in 2 weeks , and my pharmacist is going to ring me in a week to see how i am getting on with them. i will keep you posted.
I had a stroke a year ago and have been on warfarin since. My doctor (in New York City where I live) is not that familiar with APS patients and Rivaroxaban/xarelto and is consulting with a colleague who is a hematologist about my taking the drug. My INR is stable for awhile but starts to go below 2 periodically and this week was 1.8. She thinks it may be a viable option as there are no dietary restrictions. Is there any information I can give her regarding APS and Rivaroxaban?
Hi Janekins, I agree with Kate. I was put up to take part in the trials last month by Dr Jefferies from Northampton Hospital but at that time she wasn't aware that they were no longer taking volunteers. University College Hospital did indeed tell me that the results should be available sometime this year.
Maybe your Doc doesn't realise the intake has ended?
Hi Jane,
I took part in a drug trial for rivaroxaban through St Thomas over a year ago. I was diagnosed with APS and Lupus after getting a DVT about two years ago, I was put on warfarin straight away. I was then contacted a year ago by the hostpital about the trial.
What they told me was that they were only running the trial for people with an Inr range of 2-3 so if your range is above this then I don't think the drug is for you.
For me rivaroxaban has been great I see a consultant once a year at the lupus unit for a check up and my GP takes blood every 6 months for tests. I no longer have to go for INR tests every 2-4 weeks And I don't have to worry about interactions with food etc. These small things have made life seem abit more normal for me.
However like I said before this might not be the drug for you and I know that some people in the trial didn't get on with the drug I think headaches were an issue. I suppose its all down to what makes you feel the most comfortable. I have a added a link to a you tube video of the ASF patients day 2014 in which they discuss rivaroxaban and other new drugs.
I hope that helps
Robin
Hi Robin
Thank you for taking the time to reply. The Patient Day info and your personal experience has been really interesting. I'm glad that Rivaroxaban seems to be working so well for you. My INR is 3 - 4 btw.
Many thanks
Janekins
Hi Robin
I'm quite lucky and don't have too many effects of Hughes. I had multiple p.e's on both lungs about 18 months ago but with a stable INR of 2.5 seem quite lucky I only get the occasional wave of fatigue wash over me, itchy skin and probably the worst symptom, brain fog. I was quite keen to trial Rivaroxaban but just missed out on the closing date.
Be interested to know if you had similar symptoms and did Rivaroxaban help them?
Mark
Hi Mark,
Like you I haven't really had many effects of hughes or lupus, the DVT had a huge effect on my leg as I struggled to walk distances for a few months. I was/am quite a fit guy so I started to exercise again as soon as I could, my leg now feels pretty much back to normal I always wear a compression sock, I have been playing football every week and go running upto distances of 10k, however I do notice the leg tires quicker than the other one. In terms of fatigue and brain fog I don't think I have ever experienced them. I have to admit though that I do feel better since taking rivaroxaban and maybe that's because the drug gives you a bit more freedom due to less hospital visits etc.
I hope everything goes well for you Mark and the brain fog etc stops.
Funny thing is a lot of the symptoms seem to mimic age related symptoms lol I'm 47 still playing (supposedly) low contact football and have an active job. Like you, always been active and fingers crossed that stays the same.
Good luck to you and fingers crossed Rivaroxaban gets prescribed everywhere. I know a lot of people are worried about an antidote. My Consultant says that the treatment for a bleed whether its Warfarin or Rivaroxaban is the same. She says that they would give you blood plasma rather than Vitamin K anyway?!
Not sure how true that is. Did they explain treatments for bleeds to you?
Hi. I'm on rivaroxaban . Had the dvt last May . Positive test September .Also started on hydroxychloroquine sulphate 400mg. My consultant decided to continue the Rivaroxaban . No mention of it being on trail etc. I am very glad to have the freedom but I am concerned about possible accidents. Had to go to A&E for a head bang. No protocol set up yet within nhs. Lucky it was not serious .
Best
healio.com/cardiology/arrhy... Is a good read.
They are starting to look at testing with these drugs. One thing they do not have for them at the moment is an antidote and relies on its half life. Were Warfarin has an antidote? It has been found that warfarin at 70 years of age can be a cause of cranial bleeds and the others have less of a risk at this age.
I have been on warfarin since 1992 and will not be looking to change until they have an antidote or I reach 70?
Be Well
My husband is 79 and been on warfarin for 3 years. He has regular bleeds in his eyes which are very frightening. When we told his GP (he doesn't have a consultant!) he just shrugged and said ''oh dear!''
We asked about Rivaroxaban, and were told it was ''too expensive''! Mmmm!
I hear more GP's putting people on it so I do not get that as it must cost a lot to keep doing blood tests? Maybe he does not move with the times and just stopped prescribing Aspirin which has proved to be of no use as a preventative to anything!
Maybe mention the guidelines on bleeds with over 70's on warfarin?
Be Well
Hi Tipi, I am soon 71 and I am on warfarin. I also selftest every second day. Do you think that your husband could benefit of a selftesting machine? You have your own control and you know if you are at too high INR.
How often does he go to the lab for a veintest? Does he have a diagnose of APS?
Kerstin in Stockholm
We have a coagucheck machine, so we regularly test. Unfortunately he is allergic to warfarin and if the INR goes above 2.1 he bleeds, and get very 'nasty'.
He can only take the 3mm tablets as the 1's and 5's are even worse, so we have to cut them up to get the dose right.
Last year he had to stop for three days while having a minor operation on his ankle...it was like living with a different person. Pleasant to be with and no bleeds!
Are you sure he has a diagnose of APS?
If so he should have an APS-doctor who gives him the right anticoagulation. 2.1 in INR is very low when you have "sticky blood" (APS or Hughes Syndrome).
I do not know in which country you live? It is a pity that so few doctors know about APS and that is very important if he has got a diagnose of APS.
Best wishes from Kerstin in Stockholm
Thanks for that Offcut.
Like you, I think I will be staying on warfarin until I'm 70 or they find an antidote
Take care.
Janekins
I am soon 71 of age. Do you mean I should stop warfarin and take another anticoagulation drug?
Kerstin in Stockholm
It is knowing the risks and percentages so an informed decision can be made. We are all unique but we all change over time and sometimes the drugs we take can help or hinder over time?
I have only heard that when you get older you get more sensitive to warfarin (like most of other drugs also).
It can then be more important to have a selftesting machine with enough strips in order to give you a permanent level. That often means that you must have a good cooperation with the doctor in charge of your APS.
Thanks for your answer.
Kerstin
Thanks everyone for your replies. What I don't understand is if Rivaroxaban hasn't yet been approved why are GPs prescribing it !
Janekins
Jane
Lots of misinformed responses I'm afraid. The drug you have been prescribed is licensed in the UK for several different indications, including treatment of DvT and PE and secondary prevention of recurrent DvT and PE. I don't know your history, if you're on VKA for recurrent DVT/PE then your clinician probably considers you suitable for Rivaroxaban and within license. Clinical trials have shown Rivaroxaban to be non inferior to Warfarin in treating and preventing DVT and PE, but with a better bleeding profile. While there is no specific antidote a bleed can still be managed by a HCP. You could always contact the manufacturer for more info.
BW
They have considered many of the new anti-s for me but because of my extensive troubles they have not allowed any of them .i was loaded with clots in 2009 September.
Right lung full of cluster clots-- left lung massive clot a crossed the bottom of the lung and following day clots found in groin {left side }--and behind left knee and also neck and left arm pit.
so needles to say i was just loaded. i take warfarin and hydroxy- i test every 3 days but never more than 7 days with out INR being watched as i can go from a 2.4 on Tuesday and be 9.1 on Friday.
I have my troubles i guess with the warfarin but it's my only option now and top 5 Dc's are Leary of these new anti's.
but hopes of something new coming along at some point..
very interesting though. -------------------- C & J here in N.H. USA
Kerstin you self test and are LA positive ???
The research i did with all the manufacturers won't stand behind nor guarantee their own machines accuracy.
I went threw that before my 1 st surgery. ????
I know that. We have checked the selftesting machine and the veinlab value so many times and it shows a constant difference bitween the two, If your INR is higher the difference is also higher. If the INR is in range the difference is usually 0.7 - 0.8.
Hope you understand. If you like I can give you more figures. The manfacturer in Sweden knows about me. I think it is very rare to have APS and be also LA. At least they have not discovered all the others out there who is LA and have APS. You and I have also all the antibodies in high titres!
Kerstin
Add another APS and LA+ here, and like you, self-testing every other day.My venous cross check is seldom more than 0.1 different from the coaguchek. Done once per pack change, about three times a year.
First I'd heard about warfarin and 70+ issues - coming up fast.
Also first time I had heard mention of a reversing agent being worked on.
Looks like I'll have a few extra things to discuss next visit to the consultant.
Oh, and Happy New Year Kerstin and all fellow sludgebloods
It is the first time I hear one more APS and LA- positive who is selftesting and with such a small constant difference also. You can be glad because it makes it a bit easier for you. Is it also easy for you to remain on the right level?
Do you have all the antibodies and in high levels also?
I wish that Jef, who is also LA-positive, could have a selftesting machine with enough strips.
I wish you also A Happy and Healthy New Year 2015!
Kerstin
So which is Higher????
OK, here we go .......
I have taken veintests since 2011. I started selftest 10/5 2011. I Think I was a sort of a trial for the Coaguchek machine perhaps (not sure) because I did not have to pay for the machine. They knew I was positive for Lupus Anticoagulant. Two years later all persons who use warfarin in the Stockholm area have a selftesting machine for free and also the strips.
I have never paid for the machine and the strips. They know I am unusual here.
I Went on a course to know how to do it. It was my own Hematologist who held the course. There were perhaps 60 persons on that course in 2011 (one day) and most of them did not have APS.
I tested double every week for a long time and always when I go to Karolinska (my hospital) I doublecheque.
Ex.: My number 4.5, the veintest at the lab (max 3 hours later) 3.5.
Ex.: " 4.9 " 3.8
Ex .: " 4.4 " 3.4
Ex.; " 4.2 " 3.3
Ex. " 5.5 " 4.3
Ex.; " 4.4 " 3.6
Ex.: " 4.8 " 3.7
Ex.: " 4.8 " 3.8
Ex.: " 5.5 " 4.2
Ex.: " 3.3 " 2.4
Ex.: " 5.5 " 4.1
Ex.: " 4.5 " 3.4
Ex.: " 4.1 " 3.0
Ex.: " 3.2 " 2.4
This is from different times. You see it is not exactly the same difference but if the INR is high on my machine the veintest number differ more. It is not an exact difference but it has been ok every time we have done a test. I mean no faults as I have experienced. I make notes and I have expertice to ask if I need. They make curves of my different tests and I feel very safe. I feel indeed very well taken care of from my Hospital.
Kerstin
Anon 75, is correct - Rivaroxaban is licenced for PEs and DVT's - as has been for quite a while - just not licenced for APS - although nothing officially is!!! - Dabigatran was licenced by NICE just over 2 weeks ago (that's another option to Rivaroxaban) for PEs and DVT's also. The cost is about £1000 per year for the tablets. (Riv. is 1 x per day and Dabi. is 2 x per day). Test strip (glass test strip) to go into coag xs machine are about £2.50 each - GPs get paid quarterly for testing and dosing you as a patient. (Generally anything up to about £200 per year per patient) - so still cheaper using warfarin - cost about 50p per packet! Machine is around £600- £800 (dependent on Gp surgery or individual use machine). Normally you will test yourself on yours then test on surgery one - every 6 months and they're usually pretty well calibrated. (My Dad's 75, been on warfarin for 15 years and self tests - but doesn't have APS, has AF - he's doing fine). I have primary APS and am on Dabigatran - was useless on warfarin - went between 1.1 and 2.3 more low end than high, but luckily I don't seem to suffer many APS effects (my memory is not so good and I get tired - but I just try and think that's because I'm nearly 50)! So the alternative suits me - I am aware if I bleed there could be an issue (luckily I work in a GP practice and am fairly near a hospital). Hopefully one day there will be a licenced drug for APS on it's own, but there are so few of us - all the testing is high cost. (I also have had a malignant melanoma - new drugs being discussed all the time - so research is coming along nicely). I just thank God that I am around - multi PEs on both lungs & pleurisy - and medics very surprised that I had any room in my lungs for oxygen too. I am grateful for each day and make the most of it - with drugs to keep me alive :). x
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