Hi there! I was diagnosed with APS in 2014 after multiple PEs in my right lung and have been on Xarelto since. I've had seriously heavy periods while on Xarelto and have had to take iron supplements due to anemia and have had procedures to lessen the bleeding. I think this side effect is associated with other anticoagulant medication and not just Xarelto. I have had some unexplained muscle soreness, but I'm not sure if it's related to the medication. I have had to give up higher risk sports such as alpine skiing and ice hockey but otherwise my life has been pretty 'normal'. There are certain drugs that one shouldn't take while on Xarelto (ibuprofen, aspirin, St. John's wort to name a few). And one should not have liver issues. The Xarelto website will have all that information. I live in Canada and am anxiously waiting for the approval of the antidote. Hopefully it will also be approved in 2016.
I'm on Xarelto (for nearly 2 years now) and haven't had any problems. It's much easier not to muck about with blood tests etc. If you watch the 2015 Hughes conference (somewhere a link on this site) there's a question on there about reversing anticoagulants. The doctor who is giving the talk asked how many there have actually needed to reverse Warfarin. Quite long silence ensued! Have you ever needed to reverse your Warfarin in the time you have been taking it?
I could never keep a stable INR and developed clots on Heparin (after 12 months of taking it) and that led me to taking Xarelto. Certainly not advising you to go this route without full agreement with your Specialist. If you need surgery you stop taking it 24 hours before and bridge with Heparin and recommence it after 6 hours.
I have still had a couple of clots (one in spleen and one in bowel) while on this - and take Aspirin as well. I'm a bit pragmatic about the whole thing and I will go to ED if I feel somethings not right but on the whole I mostly feel pretty good.
I find I bruise less and don't look like a zombie dripping blood as I was on Warfarin-probably because my INR's would go from 1.0 to 7.0 no matter how religiously I tested and took appropriate dose
I have now been on xerelo riveroxoban for 6 months now have had no problems taking it at all. Still do 2 jobs. No tests every week. But not really knowing if bloods are good or not? Without any tests I can only tell you, I feel okay get much less bruising. Am tired need 9 hrs sleep but that can be holding down 2 jobs. I know my specialist really does not rate riveroxoban for aps. But my local gp spoke to several specialists and they said long term would cost him less to put me on riveroxoban and cost less to see a nurse every week. Also good for hospital operations etc. After 2 strokes do not want another as might not be so lucky. My friends in America and Canada did tell me some scary stories about xerelto. But so far so good for me. Good luck. Happy New year everyone. All health and happiness for 2016 x
We all seem to be rather individualistic when it comes to which med works for us. But for me: Warfarin pushed the " off" button on my strokes and my INR has stayed remarkably stable for all but 3 tests within 16 years on the drug. No, I don't enjoy the blood tests, and I do miss eating liver and onions and all the kale chips I want. But I certainly don't miss the strokes!
I'm on Eliquis, have been for about 5 months now (since diagnosis), and I'm happy with it. Just take it twice a day, not having to go in for testing is nice.
I was on Xarelto after my pulmonary embolus him a year ago November. I had tested negative for APS at that time. Shortly after I stopped taking Xarelto six months later, I tested positive and then went on warfarin. My doctor told me that Xarelto and other newer drugs are not yet approved for APS, although there are studies currently going on and it could be approved soon depending on the results. I have only been taking warfarin for a few months, but my INR levels have been reasonable so for myself, I don't think I would consider AVswitch until the results of the studies are out, and a possible reversal would be great! I do feel much less anxious on warfarin then Xarelto. This may be because one, I am used to the idea of taking a blood thinner now, and two because of the potential to reverse it. When I was taking Xarelto I was very anxious and scared...
I'm not looking to switch right now, just for info on possible alternatives. Warfarin is the only one I know anything about. My INR is cyclical on warfarin and I'm again increasing to get back to therapeutic.
My docs know about APS and how to treat it, but none are specialists. I do see a stroke neurologist due to having had seizures.
I was on shots while in the hospital and was sent home with them for a few days.
I just want to find the best way to stay clot/stroke free.
I haven't done much deep reading yet on these drugs yet for APS patients, but will before making any decisions.
I'd like to correspond with APS specialists, but not sure any will without me being a patient. Maybe I can get one of my docs to do it...
I'm on Xarelto and I have been for 2 years. I had a terrible response to Coumadin. I could never keep a stable INR. My hemotologist initially put me on Arixtra, but injecting myself was stress and tedious, so when my hemotologist decided to switch to Xarelto, I was elated.
As far as side effects, I often get anemic, so my hemotologist reccomends iron infusions with a higher dose every 4 months. Of course, this is a minor annoyance compared to nightly injections or my issues with Coumadin.
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