Has anyone who is triple antibody positive being converted to the newer Anticoagulants known as DOAC such any of the following medications dabigatran (Pradaxa), rivaroxaban (Xarelto), apixaban (Eliquis), edoxaban (Savaysa), and betrixaban (Bevyxxa)
If you have, are you satisfied and would you say its better or worse than warfarin
These are not recommended by Bayer (manufacturer) for any triple +ve APS patients. You can still clot on these. They are so much more convenient than Warfarin or injections. Who recommended you should change over?
Hi, I was part of the original trial for rivaroxaban, whilst on it, I noticed more bleeding from small cuts than normal but other wise had no issues. But as triple positive, was pulled off it as soon as others were experiencing clots.DOAC are now not advised or approved for triple positive patients.
I am aware that there are some people still taking them, but this is an individual decision between them and their specialist when other alternatives are not suitable.
Thank you for the your detailed reply. My wife has been on Wafarin for over 20 years and there is a small concern of calcification of te blood vessels. She is on Vitamin K2 which so far appears to have prevented this. Wanted to see if despite what the recommendations were that some people had tried the DOAC’s and found them to work for them. Again we appreciate your response!!!
I am unable to take warfarin and the last 20 years I have been on clexane. The risk for me is thinning of the bones, I have to have scans checking bone density every 3-4 years. So far so good but not sure what they will offer if I am to come off the clexane!
Hi Holly. I put my wife on Vitamin K2 to prevent calcification of blood vessels and it also stops or prevent osteoporosis. It's actually used a lot in Japan for this in combination with Vitamin D. We both take 1 capsule daily of the SeekingHealth brand of Vitamin D3 and K2. You may want to look into it
Thanks - all ready prescribed 😉
Hi nmousdic, I am triple positive with high titres. Sjogrens, Hashimotos, etc. I have had both veinous and arterial clots, before medication
I was on warfarin (Jantoven) for 10 1/2 years and my INR was consistently unstable despite obsessively counting my vitamin k mgs and watching my diet. Blood draws often weekly.
I’m on apixiban (Eliquis) now for just short of 6 years. This change was because of severe migraines. Since changing I’ve had no clots, much reduced microclots, and far less nosebleeds as well as less severe nosebleeds. And I can eat more nutritiously. It has been a life-changing positive move for me.
In my opinion - Many meds are used off label. Apixiban has been lumped with rivoaroxiban in some studies and results are misleading because the studies treat them as the same, and they aren’t the same. For decades I used all sorts of off label meds to try to control the migraines, only now are there dedicated migraine meds. I hope proper double blind studies will be done.
We are all different - this works very well for me, and I hope it continues to do so. It has reduced my migraines significantly, and I can eat more nutritiously. For me, it is win-win. It’s not for everyone, but it is very good for me.
Why are the docs wanting to change your med? Feel free to message me. Anita in CO
Thank you for the your detailed reply. My wife has been on Wafarin for over 20 years and there is a small concern of calcification of te blood vessels. She is on Vitamin K2 which so far appears to have prevented this. Wanted to see if despite what the recommendations were that some people had tried the DOAC’s and found them to work for them. Again we appreciate your response!!!
Thanks for taking the trouble to explain your own particular case. MaryF
You’re welcome, it is individual and is good for me, but not for everyone. It made my life more liveable by helping control the migraines.
I’ve wondered if I had such trouble with warfarin because I was allergic or reacting to something in the binders and fillers. I’ll probably never know. Anita
I was told by Mayo that being triple positive, warfarin only...for me.
Just to be clear, the Traps study was on rivaroxiban.
There are several different DOACs and they aren’t the same as each other. I’m triple positive and on a different DOAC.
Reading the studies is difficult (for me at least) and sometimes the DOACs they study are varied, making the study and the results more confusing.
I also understand that there was a limitation on dosage of Rivofaxine, only 5mg once a day. 5 mg twice a day has made an enormous improvement of my Quality of Life. Still need an extra 5 mg 1 -2 / week to relieve migraine symptoms. Works well.
I was switched from warfarin to Rivaroxaban I’m September 2022. By December I was back on warfarin due to the amount of APS symptoms I was displaying. I was sluggish, brain fog, had multiple falls, stomach problems, weight gain. I’m now over a month in from switching back to warfarin and all those problems have gone. I was switched as the Fragmin injections are causing large haematomas in my stomach and I needed to have a break from them. The APS Consultation advised that Rivaroxaban had been approved for APS patients but, given the sudden change in symptoms I had, I’d say not, I really did feel like I was clotting. They switched me back within a day once I’d told them how it was making me feel.
hi, I have been on dabigatran for a Few years now and don’t have any issues with it, I’m triple + and under St Thomas hospital London and they have not taken me off it as have not had any clotting issues.
yes. Apixiban ( 10mg twice daily) plus statin plus clopidogrel.
Symptoms of APS straight away- dose changed to 10mg am and 12.5 pm
Then 15 am and 15 pm
taken off within a week- confirm 2 DVT’s in brachial and I in cephalic between the two arms, return of seizures, migraines from the bowels of hades , and suspected TIA.
Switched back to warfarin
Has anyone been prescribed Rivaroxaban.
Been to the doctors but she missed the point. Anyone?
Anyone else been diagnosed with Meniere's disease?
Anyone who was discharged from St Thomas's 
Have you been discharged from Tommies/Guys in last 18 months
