Have any DOAC'S been approved as a safe alternative to warfarin in treating primary APS? I live in the States and will be meeting with a non APS specialist hematologist in a week or so to discuss the use of the DOAC eliquis for the treatment of my primary APS. I've not researched the use of DOAC'S since the TRAP'S trials recommended NOT treating APS with DOAC'S. I'd like to be more knowledgeable regarding this before I meet with this hematologist.
Thanks, raven.
I hope your appointment goes well, though I have no pharmaceutical advice as I have been well treated on warfarin since 2001.
Hi I’m in the UK, I have APS but sero negative at the moment. I’ve been on warfarin for many years until I started to suffer with serious nosebleeds. I’m female & 70 years old.
My haematologist switched me to Apixaban then to Riveroxaban and I’m about to try Edoxaban as the first two caused muscle weakness and therefore constant tiredness. My haematologist who is very knowledgable about APS said Warfarin is the best anticoagulant for this condition but she was willing to let me try DOAC’s due to Warfarin intolerance and low disease activity.
The take home message I got is that there is flexibility in choice of anticoagulant dependant on your medical history.
Hope this helps and good luck with your appointment.
Hi there- I am APS positive and have done extensive research and used meds myself. Eliquis is absoutely contraindicated for people with APS. Did a doctor prescribe this for you? FDA warns against using it. I have used Lovenox injections twice pre and post operatively with no problems. I take 81mg of low dose aspirin as my daily anticoagulant therapy. I have only had one small dvt related to COVID and took Eliquis before it was banned by the FDA, for those of us with APS. I took it short-term and, luckily did not have any known damage. Do your research because you can't count on the doctors to know everything. Private message me if you need an APS specialist. I can help if you are in or able to travel to Southern California.
I am surprised you are on Eliquis. The FDA placed a black box warning against taking it if you have APS. Please talk tonyour doctor about this
I live in the US and have been on Warfarin for 20 years. During this time, I tried Eliquis and Xarelto. Neither one helped at all.
When I spoke to my rheumatologist about this, she explained that neither Eliq. or Xar. regulates INR adequately in APLS patients. If you take one of them and you're tested, expect an INR of 2.0 (or lower). I knew these drugs weren't working bcz they made me feel quite stupid.
Stay on Warfarin. Your brain will thank you.
Not sure your rhuemy explained that very well. Eliquis and Xarelto are factor Xa inhibitors, INR is a measurement that only actually works for Vit K inhibitors. They may actually raise INR, or not, but since this is not how they actually work this isn't relevant. Heparin doesn't directly affect INR either - doesn't mean it doesn't work.
Heparin therapuetic levels are measured using APTT or anti-Xa assays, Xarelto Eliquis etc. also use anti-Xa, Warfarin and other VKAs use INR.
Worrying about INR with a factor-Xa inhibitor is like worrying about how many gallons of fuel you have left in an electric car - it is completely the wrong thing to be looking at.
Thanks, Ray. Very useful info.
As I understand it the short answer to your question is: no.
Longer answer:
I think there are DOAC trials still in progress in the UK, not sure how they are going, the RAPS trial was not a definitive result and the TRAPS trial, as you say, was a negative result.
Not sure how many trials will be taking place in future following failure of TRAPS, I suspect that APS patients are going to be one of the small groups left on Warfarin by default - probably too small a market for anyone to develop new drugs for. My main concern with this (aside from the negatives and side effects of the drug itself) is that the Warfarin testing and support infrastructure is going to be gradually dismantled as the vast majority of patients are put on or moved newer safer easier to manage drugs.
So essentially you are stuck with warfarin, UNLESS you have a significant problem with warfarin in which case doctors will try you on other drugs, but those will be off-label (I think even heparin is off-label except if pregnant?). By significant problem I mean (life-threatening) allergy to warfarin or INR cannot be stabilised on warfarin - at least that is what I have been told.
I have some of what I’ve learned are as good as any APS Drs in thevUS. Every specialist tells me the same: Eliquis and Xarektonare NOT effective in deakingvwithvAPS. There is research continuing but fir now, warfarin is most effective. As you should know, none of these are “dudes” firvSPS. Warfarin only aids your body in coping with clotting.
Find good, knowledgeable, caring professionals. Too many people prattle-on just to hear themselves pontificate. It’s your life at risk.
I wouldn’t say you’re “stuck” with warfarin since it can save your life.
Hi, I live in Sweden and I am triple positive with high titres since several years and take Warfarin for my APS since 2011.
It has been my lifesaver. I have to have a rather high INR to feel ok with it (around 4.0)
The most important thing is to have a Specialist who works with these patients who have autoimmun illnesses like APS, SLE, RA and Sjögrens every day, usually a Rheumatologist or a Hematologist.
Best of luck!
Great to “see” you here, Lure. I’ve missed you on here and hope you’ve been well.
I have been on post-stroke warfarin for 20 years. I tried eliquis for 2 months and hated it. I had brain fog and felt stupid.
The Eliquis ads on American TV have a blip at the end: NOT TO BE USED FOR APS. Apparently Eli. does not require regular blood tests. IMPORTANT!! Eliquis DOES NOT elevate the INR adequately, and to keep us safe
I should just leave this alone since I've corrected you previously, but this statement:
IMPORTANT!! Eliquis DOES NOT elevate the INR adequately
Is not just utter nonsense, it is actually dangerous nonsense.
* INR is a test for hemostasis / (anti)coagulation for patients on a VKA. ONLY. It is NOT a general test for all patients, or even all patients on anti-coagulants.
* If you are on a DOAC your INR is "undefined", no calibration or conversion from PT exists in presence of DOACs, the fact that you can get a machine or lab to give you a number if (in effect) you lie and say you are on a VKA, just means you wasted testing resources getting a meaningless number. Even raw PT is useless for some DOACs (e.g. Eliquis) as they have no effect on it (which does NOT mean the patient is not anti-coagulated, think about what Heparin/LMWH does to your INR).
The reason this myth, that you can somehow get an "INR" for a patient on DOACs, is dangerous is that although DOACs don't need routine testing, there are situations when testing is indicated, often potential life or death decisions - exactly the sort of decisions you don't want clinicians to be making based on a meaningless number from the wrong type of test. There is sufficient concern about this amongst medical professionals with a clue that there are multiple research trials already to establish exactly how prevalent, and how risky, this myth is.
As patients we don't have a professional responsibility around medical misinformation, but I do think we have some moral responsibility not to spread it. If I ever hear any clinician talking about INR for a DOAC patient I will correct them, and may well make a formal complaint - it is simply too dangerous to let it go.
If you can possible get a APS Specialist with up to date working knowledge, it would greatly help you. MaryF
Hi, I’m currently on Enoxaparin (LMWH) due to my inability to cope with warfarin in a life with frequent travel a lot of time overseas and very long hours. I started by self testing, which was ok, but can’t any more as it was too far out with the vein test. Enoxaparin is so expensive that my GP isn’t allowed to prescribe it, it has to come from the hospital my consultant works at. You have to work hard to get this in the U.K. and they wouldn’t give it to you if they thought DOACs were a reasonable option.
Hi. There was some research done which compared people with APS on warfarin and those on rivaroxaban. More people had further clots from the group on rivaroxaban compared to those on warfarin. In fact the research was stopped because of the clotting on rivaroxaban. I was told by other patients that The makers of rivaroxaban actually contacted doctors to say that rivaroxaban was not suitable for APS. It was felt that all DOACs would react similarly to rivaroxaban. Therefore first Europe and then the UK said that warfarin was the drug of choice for APS patients. Obviously if there are allergy problems or if you can’t stabilise on warfarin then it won’t be used. As far as I’m aware, low molecular weight heparin injections (eg lovenox) are as effective but come with long term issues. So if we for example have an operation, we come off warfarin and have the injections up to and straight after the op but then go back to warfarin.
I had been taking warfarin for 20+ years in the US. My numbers started to become unstable and the Coumadin clinic changed me to Jantoven. I have been stable since then, over 2 years.
I am refractory thrombotic, have clotted and Re clotted on everything thrown at me. In desperation I was trialed on very high dose apixiban ( Eliquis) pus antiplatlet and statin, but 3 DVT’s within 8-10 days. Probable TIS’s, horiffic migraines, seizures. Brain scan showed no bleed. ( had to rule it out.)
I was put on warfarin but found to be allergic so switched to Fragmin (heparin) injections. That was 13 years ago. I have constant bone scans and so far so good. I’m being monitored but there is nothing really to switch to so it’s important to just minimise any possible side effects if they occur.
I’d stay on the warfarin if you can.
Triple positive with high tires, Sjogren's, LA, Hashimoto's etc, I am on apixiban for going on eight (8) years, and doing very well. My APS specialist figured out that my severe, debilitating migraines were due to a reaction to warfarin. I was on warfarin for over 10 years. She is a life saver.
One size does not fit all.
Exactly, some doctors are actually prescribing Eliquis for APS patients, because Warfarin has been known to cause serious bleeding & other problems. Eliquis is one of the newer anticoagulant drugs that requires less monitoring with GOOD RESULTS. I Pray that you continue in good health.
Thank you catlove123.
I've had APS for 30 years. I see a hematologist once a year, just to find out if there's a new treatment/alternative to Warfarin (my primary care doctor follows my INR's). So far, Warfarin is still the most effective treatment, and only recommended one for APS. I'm sure we all hate being on it & having to watch everything we eat.
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