Hi I’ve been diagnosed with APS as a result of having clots in the lungs (Pulmonary embolism). Current treatment is Apixaban (Eliquis) 5 mg tablet morning and night on going. I have been advised by my specialist that Eliquis may not be as effective as Warfarin. Was wondering if anyone had similar symptoms and was taking Pradaxa to eliminate clots within the lungs?
Thanks Karl
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Your specialist should not just have warned you that Apixiban a DOAC is not as effective but should also have told you that he should not prescribe it to people with APS, only warfarin. The only patients taking DOACs are those that were already on them before the ban was started and they can decide what is best for the individual patient. Unfortunately it’s not a case of avoiding warfarin unless you inject LMWH instead as clots in the lungs are a very serious matter and can even kill you. If I were you I’d think seriously about taking what’s advised rather than what you’d prefer.
Thank you for your reply. I’ve already been on Apixaban prior to my diagnosis of APS. Apixaban has relieved my symptoms of shortness of breath.
Maybe best to ask your clinician rather than a group of armchair medics. The "advice" from Star13 is factually incorrect
I think most of the answers on here, are guiding the individual patient to a conversation with their professional medical consultant, we all learn from each other, and some medical consultants are not up to speed with Hughes Syndrome/APS. We as administrators will always guide towards professional care indicating that we are not medical experts. Sorry for late reply, been way camping with no internet. MaryF
Hi, sadly we are not armchair medics we are real people with many years of experience, most of us have had to learn from each other.All our replies will steer towards the medical profession for answers, with limited time at our appointments it's important to have an open mind, our questions ready, so we can make informed decisions on our medication regime with our specialists.
Hi, I’ve been on Rivaroxabin and now Apixaban for the last 4/5 years due to initial multiple Pulmonary Embolism and diagnosed with APLS. Hughes team put me on it and there I shall happily stay. I used toCough a lot and get what I thought was very painful indigestion but turns out that pain was due to clots. One day that pain became too much (a big clot) and I was rushed to A&E and that’s when they discovered the APLS.
I’ve had no more ‘indigestion’ pain since been on Eliquis but am left with a tiny cough/sensitive lungs and not the full O2 capacity.
Why would the Hughes team in London prescribe this if it was not adequate?
I was diagnosed in the same way 26 years ago and have been on Warfarin ever since staying within range 90% of the time. Monitoring can be a nuisance if that’s the issue but it can also be reassuring. I am wondering why your specialist team have prescribed Eliquis if they don’t think it adequate.
My son does not have APS but a genetic clotting issue. He takes Pradaxa to prevent DVTs and PEs. This is not his doctor’s first choice but all other meds failed. As long as he takes it as prescribed it works. I take Axixaban for APS since 2019 and have not had any DVTs. I tried Warfarin but at 60 mg a day, I could not get my INR over 2 so I’m on Axixaban.
I would follow my doctors advise over my personal preference. I wish you the best!
You should only take warfrin. Nothing else is affective for APSI was diagnosed in 2008 after PE. I switched to adoxoban but had to switch back to warfrin as there was research that came out in June 2019 that stated patients with APS should only be on warfrin
My specialist told me this
Team work with your consultant to get the best possible anticoagulant programme for you. I have never had this or Warfarin, so can't comment from personal experience, keep a close eye on yourself and report any new symptoms to your GP or consultant. MaryF
Hi Santa G,
You have got a lot of different answers.
I have been on this site for several years and I live in Sweden and have had APS since 2002 (diagnosed that year). I have Pulmonary Hypertension (PE) and 2 leaking heartvalves today. If you read about this illness you vill find that some of us get these rather unusual and serious symptoms.
Probably I had a lot of PEs but so tiny that they were not seen on a Scan of today.
Finally I was put on Warfarin and now I have two Specialists of APS. I am not a Doctor, but if you had seen the right Specialist he or she had probably put you on Warfarin.
If you also are positive to Lupus Anticoagulant (one of the 3 antibodies they test twice before diagnose) and not the illness Lupus , that can be another strong reason to take Warfarin.
So the most important thing is to have a Specialist. Anticoagulation is necessary but it is important to know what sort of Anticoagulation this patient needs (the clots and PEs etc etc will not be seen at once if you have the wrong medication).
Hope you stay with us here and I wish you good luck to find the Specialist who handles these patients with APS and other autoimmun illnesses (they often go hand in hand with SLE, Sjögrens, Thyroid-issues) every day. They are very rare and so important for us. Try to learn as much as possible of APS!
And also....... I am sure your Specialist will let you have Echocardiographies on lung and heart. I have had around 12 every year.
Pulmonary Hypertension (PH) not PE even if they are often the reason. Sorry.
I have been on warfarin since 2001. I have never had a PE, but prior to my warfarin, I had constant migraines ( which subsequent MRIs revealed were actually strokes. ) Warfarin has a bad reputation. I believe this is because patients must be responsible, and in many -if not most-bad warfarin events are due to patient ignorance or irresponsibility. But we're all different, and finding the APS med best for you is a process. On warfarin one must submit to regular blood monitor tests, and must remain consistent in intake of foods that interact with warfarin's efficacy. And also drink water amounts consistently -( factoring in heat and sweat needs.) The hematologist who diagnosed APS and first prescribed warfarin explained this to me and gave me a list of foods that will " thin the blood, " ( i.e, warfarin agonists, )and those that will ' thicken the blood, (" i.e., warfarin antagonists.) He suggested I keep a detailed journal of foods, meds. activities and INR results for some months and I would begin to notice correlations which would help me manage warfarin doseage. With that advice I can boast that my INR has been out of range less than 6 times in 20 years. Diet issues are annoying, but no more strokes? Yeah! I can literally live with that!
I have been on warfarin 30 years no more clots.
I was told newer anticoagulants were not recommended for APS. Warfarin only,?
I was diagnosed with APS after having 2 episodes of pulmonary embolisms. My dr had just gone to a seminar on APS at Mayo Clinic and was told Warfarin is more effective for APS. Thats what I've been on the last 2 years with no problems.
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