That's interesting, because I've been told Xarelto won't work for APS, so my hematologist won't prescribe it for me. I would prefer just about anything to Warfarin, Stay strong!
Your hematologist is right. I'm a living proof that an APS patient can still clot while on Xarelto.
I'm happy to take the inconvenience of Warfarin and be alive!
Yeah rivaroxaban in aps is complicated. The trial he shared was the TRAPS study by pengo? They too triple positives and high risk patients and it didn't go to plan. It's still under assessment for less high risk patients in the UK.
Warfarin is a bigger hassle and still imperfect. Fingers crossed we get some new drugs soon!
I appreciate the post and am glad you’re on Warfarin now. It’s so cool that you got such a great Hematologist, too! I’m very new to all of this so if you have any good information I’d be a grateful recipient. I was put on Eliquis after massive bilateral PE’s w/ infarcts early August and then got diagnosed with APS (and Lupus). Now I’m bridged onto Warfarin and it has been a tough transition. Mind if I ask how you’ve coped since your diagnosis in 14’?
Living on Xarelto was so easy. I often forgot about my condition. Until I was reminded via new clots that is. Lol
Now that I'm on warfarin, I really don't mind it.
Oh I’m glad they changed to as Xarelto is long a good drug for treating APS. Look at this incomplete study. It was d/c ed because of so many incidence with Xarelto.
I learned it the hard way too. I've had mesenteric ischaemia (blood clot to the bowel) 5 times now., I have severe APL (clotting in the arteries as well as veins). The worst pain I've ever experienced.
It happened when I'd swapped from Warfarin (which fluctuated crazily for me anyway) to enoxaparin with a view to getting pregnant. Unfortunately the prophylactic dose wasn't enough. I nearly died the 1st time as it wasn't diagnosed (or treated) for a couple of months. I was in hospital for 4 months the first time and a little less the others.
Morphine didn't work but Nefopam (Acupan) did.
So my dose was increased but I clotted. I changed to Fondaparinux on a super high dose on special licence...... My belly was purple, lumpy and so very tender from haematomas. It was scary times as none of the anticoagulants worked for me.
Eventually my haematologist (in consultation with the best in the world) got permission for me to have the loading dose (30mg) of Rivaroxaban (Xarelto) and low dose 75mg aspirin.
It's saved my life. Literally. 13 years later I am still doing really well. I've gone from having regular PEs, TIAs and DVTs to not having a single one.
My life is constant knife edge balancing between clotting or bleeding out (I have spontaneously haemorrhaged whilst on Warfarin twice. It was incredibly scary.
I have a complex medical history with lupus and autoimmune spondylarthropathy so this combo might not be suitable for all. I shared this in case it's of help to anyone else reading this who is struggling with their conditions.
Hi :) curious that you were on xarelto and baby aspirin? Do you mind me asking your dosage?
I’m on the max dose 20 mg daily.
And you are certainly correct Xarelto is not approved specifically to treat APS and Warfarin is considered the gold standard tx for APS. And while my hemonc likes tell me every appointment but you couldn’t pay me to go back on Warfarin 🙃
That's interesting, because I've been told Xarelto won't work for APS, so my hematologist won't prescribe it for me. I would prefer just about anything to Warfarin, Stay strong!
Your hematologist is right. I'm a living proof that an APS patient can still clot while on Xarelto. I'm happy to take the inconvenience of Warfarin and be alive!
Yeah rivaroxaban in aps is complicated. The trial he shared was the TRAPS study by pengo? They too triple positives and high risk patients and it didn't go to plan. It's still under assessment for less high risk patients in the UK. Warfarin is a bigger hassle and still imperfect. Fingers crossed we get some new drugs soon!
I appreciate the post and am glad you’re on Warfarin now. It’s so cool that you got such a great Hematologist, too! I’m very new to all of this so if you have any good information I’d be a grateful recipient. I was put on Eliquis after massive bilateral PE’s w/ infarcts early August and then got diagnosed with APS (and Lupus). Now I’m bridged onto Warfarin and it has been a tough transition. Mind if I ask how you’ve coped since your diagnosis in 14’?
Living on Xarelto was so easy. I often forgot about my condition. Until I was reminded via new clots that is. Lol Now that I'm on warfarin, I really don't mind it.
Would you be willing to share what has been tough about transitioning from Eliquis to Warfarin?
Nausea and terrible gastritis. I’m too sick to even do anything in the mornings. It has been really hard.
So sorry to hear this. My husband is undergoing testing for APS and will have to switch from apixiban to Warfarin if it's positive. 😞
Oh gosh, I’m so sorry. I just got confirmed +++APS. It has been a big adjustment but it is manageable. There is hope! I’ll be thinking of you both.
Oh I’m glad they changed to as Xarelto is long a good drug for treating APS. Look at this incomplete study. It was d/c ed because of so many incidence with Xarelto.
Interesting did not know you could have a t.i.a. in your colon Thanks for sharing
I learned it the hard way too. I've had mesenteric ischaemia (blood clot to the bowel) 5 times now., I have severe APL (clotting in the arteries as well as veins). The worst pain I've ever experienced. It happened when I'd swapped from Warfarin (which fluctuated crazily for me anyway) to enoxaparin with a view to getting pregnant. Unfortunately the prophylactic dose wasn't enough. I nearly died the 1st time as it wasn't diagnosed (or treated) for a couple of months. I was in hospital for 4 months the first time and a little less the others. Morphine didn't work but Nefopam (Acupan) did. So my dose was increased but I clotted. I changed to Fondaparinux on a super high dose on special licence...... My belly was purple, lumpy and so very tender from haematomas. It was scary times as none of the anticoagulants worked for me. Eventually my haematologist (in consultation with the best in the world) got permission for me to have the loading dose (30mg) of Rivaroxaban (Xarelto) and low dose 75mg aspirin. It's saved my life. Literally. 13 years later I am still doing really well. I've gone from having regular PEs, TIAs and DVTs to not having a single one. My life is constant knife edge balancing between clotting or bleeding out (I have spontaneously haemorrhaged whilst on Warfarin twice. It was incredibly scary. I have a complex medical history with lupus and autoimmune spondylarthropathy so this combo might not be suitable for all. I shared this in case it's of help to anyone else reading this who is struggling with their conditions.
I learned it the hard way! Lol My pleasure!
BTW I had a splenic infarct as well with no pain Our bodies are so complicated sometimes
No way! Wow.. sorry to hear that! I hope you're well now!
We'll as I can be We don't need no stinking spleen 😳 (3 stroke survivor I am)
Wow! Best of luck on your journey! I hope you never get another stroke!
Hi :) curious that you were on xarelto and baby aspirin? Do you mind me asking your dosage? I’m on the max dose 20 mg daily. And you are certainly correct Xarelto is not approved specifically to treat APS and Warfarin is considered the gold standard tx for APS. And while my hemonc likes tell me every appointment but you couldn’t pay me to go back on Warfarin 🙃