Xarelto or Warafin for APS?

Posted by scottham777 @scottham777, Aug 24 1:40am

I really want an honest opinion on which drug is most beneficial for APS in preventing clots. I had a PE (clot) in. November 2023, and a recent MRI showed a mild stroke (which may or may not have been cause by APS) according to my neurologist. I am currently on Xarelto and have been since November 2023. Test always show no clots in CAT scans for pulmonary embolism, at least 3 times and no clots in other areas according D-dimer and other blood tests. My new PC wants to put me on Warafin, because he said it is much better than Xarelto for APS. Any thoughts?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

I was told by a hematologist that Coumadin is the best blood thinner for APS. I’m still waiting to find out if I need to switch from eliquis to Coumadin.

REPLY

I don't have Antiphospholipid Syndrome but I'm on Eliquis 2.5 mg twice daily after having a DVT followed by a POE last year. There is quite a bit of information in this reference that was last updated Feb 2024 that might be helpful.

-- Patient education: Antiphospholipid syndrome (Beyond the Basics)
https://www.uptodate.com/contents/antiphospholipid-syndrome-beyond-the-basics/print

REPLY
@reets70

I was told by a hematologist that Coumadin is the best blood thinner for APS. I’m still waiting to find out if I need to switch from eliquis to Coumadin.

Jump to this post

Thank you! Please let me know if and when you do switch.

REPLY
@johnbishop

I don't have Antiphospholipid Syndrome but I'm on Eliquis 2.5 mg twice daily after having a DVT followed by a POE last year. There is quite a bit of information in this reference that was last updated Feb 2024 that might be helpful.

-- Patient education: Antiphospholipid syndrome (Beyond the Basics)
https://www.uptodate.com/contents/antiphospholipid-syndrome-beyond-the-basics/print

Jump to this post

Thank you! How effective has the Eliquis 2.5 mg twice daily been for you?

REPLY
@scottham777

Thank you! How effective has the Eliquis 2.5 mg twice daily been for you?

Jump to this post

I've been taking the 2.5 mg morning and evening for going on 6 month's and it seems to be working OK. I am scheduled to meet with my Mayo cardiologist later this year to see if I need to continue on it or can stop taking it.

REPLY

My son has antiphospholipid syndrome and has been on warfarin since 2007. However his doctor changed him to pradexa 2010/11. Late 2011 he had another TIA. FIRST TIA WAS in 2007 when we learned he had APS.. Drs told him he has to be on warfarin forever. They think pradexa caused a vegetative growth in his aortic valve. THEY PUT HIM ON 10 wks of IV antibiotics every four hrs. In 2020, his cardiologist found either more vegetative growth or severe stenosis of his aortic valve. He had open heart surgery in August 2020 and they replaced his aortic valve with a pig valve. Then more recently same cardiologist did another echo and found severe stenosis again. May 29 he had a TAVR procedure replacing pig valve. My son is 53. Since his APS diagnosis 2007, he has also been diagnosed with Diabetes 2, chronic kidney disease, high blood pressure, seizures, and on July 4th he lost his eye sight. Went to bed July 3rd could see fine and woke up the next morning and could not see. Spent 2 wks in hospital running all kinds of tests, IV Steroids trying to reduce swelling of his optic nerve. Did 7 treatments of plasma exchange. Didn’t help. Docs said it may take 8 mos to see a difference and the best he could hope for would be only 80%. Hosp referred him to Atlanta Neuroscience Institute for further evaluation. Saw a MS specialist, she didn’t think it was MS. With MS, you may lose vision in just one eye not both. Doc indicated it might be neuromyelitis optica. Another autoimmune disease that attacks the myelin that insulates/ covers your nerves in you spinal cord, brain stem and optic nerve. Have new tests this coming week, 2 MRIS (thoracic spine and cervical). And Another lumbar puncture. It’s another rare neuro disease. No cure. Hopefully we’ll find out exactly what’s going on. Just wanted to let all you APS patients know warfarin is what he is taking. APS is a horrible autoimmune disease. Oh one more thing I discovered after reading up on neuromyelitis optica (NMO), there is a correlation/ connection to APS!!!! He has had APS for 17 yrs. You all keep good tract of your INR levels. My son’s INR range is 2-3. If his INR is outside that range he has to coordinate with his Coumadin clinic to change dosage until he’s back in the 2-3 range. Very important! God bless all of you who are dealing with APS.

REPLY

reply to scottham777 In regards to Warfarin. I am a female of 94 years young. I would venture to say I have been on Warfarin/Coumadin for 30 years. Your doctor could be right. My doctor has tried to take me off Warfarin for a number of years. I always refuse. It is better the devil you do know than the one you don't. That is an old saying. For some people being on Coumadin can be a real hassle. Blood draws frequently to see how fast or slow your blood clots. Changes of dosage depending on your reading at that time. I found out through a trip to the ER that I was glad & so were the doctors that I was on Warfarin because I needed a SPINAL TAP immediately. Being on Warfarin they were able to immediately reverse the thinning effects of the Warfarin & proceed with my Spinal Tap. If I had been on the other newer blood thinners this could not have taken place immediately as needed in my case. Warfarin was a real PLUS for me at that time. I always keep it in mind. Warfarin as you probably know is a Rat Poison. It has kept this old rat alive for 30 years. I do not intend to give it up now. Your decision your body will be between you & your doctor & what he/she feels is best for your ongoing health & how confident you are in your doctor. Convenience might be a decision maker for you or the inconvenience of PTO/INR Blood draws. You might want to ask your doctor one question. Is the Medication you are on now Reversible incase of an emergency ?? I am sure you will make the right choice. If you decide on Warfarin & do not like it you can always go back to what you are on now. If by chance you are with Scripps or it is available to you they have an excellent Coumadin Clinic. You will be taken care of like you were one of the family. Best of health to you. Regards, boomarang

REPLY
@bjbail70

My son has antiphospholipid syndrome and has been on warfarin since 2007. However his doctor changed him to pradexa 2010/11. Late 2011 he had another TIA. FIRST TIA WAS in 2007 when we learned he had APS.. Drs told him he has to be on warfarin forever. They think pradexa caused a vegetative growth in his aortic valve. THEY PUT HIM ON 10 wks of IV antibiotics every four hrs. In 2020, his cardiologist found either more vegetative growth or severe stenosis of his aortic valve. He had open heart surgery in August 2020 and they replaced his aortic valve with a pig valve. Then more recently same cardiologist did another echo and found severe stenosis again. May 29 he had a TAVR procedure replacing pig valve. My son is 53. Since his APS diagnosis 2007, he has also been diagnosed with Diabetes 2, chronic kidney disease, high blood pressure, seizures, and on July 4th he lost his eye sight. Went to bed July 3rd could see fine and woke up the next morning and could not see. Spent 2 wks in hospital running all kinds of tests, IV Steroids trying to reduce swelling of his optic nerve. Did 7 treatments of plasma exchange. Didn’t help. Docs said it may take 8 mos to see a difference and the best he could hope for would be only 80%. Hosp referred him to Atlanta Neuroscience Institute for further evaluation. Saw a MS specialist, she didn’t think it was MS. With MS, you may lose vision in just one eye not both. Doc indicated it might be neuromyelitis optica. Another autoimmune disease that attacks the myelin that insulates/ covers your nerves in you spinal cord, brain stem and optic nerve. Have new tests this coming week, 2 MRIS (thoracic spine and cervical). And Another lumbar puncture. It’s another rare neuro disease. No cure. Hopefully we’ll find out exactly what’s going on. Just wanted to let all you APS patients know warfarin is what he is taking. APS is a horrible autoimmune disease. Oh one more thing I discovered after reading up on neuromyelitis optica (NMO), there is a correlation/ connection to APS!!!! He has had APS for 17 yrs. You all keep good tract of your INR levels. My son’s INR range is 2-3. If his INR is outside that range he has to coordinate with his Coumadin clinic to change dosage until he’s back in the 2-3 range. Very important! God bless all of you who are dealing with APS.

Jump to this post

Thanks for the reply! I'm so sorry for your son...I thought I was going through a tough time, but your son is going through much more. It seems that you are a believer in God, and so am I (awesome)! So just to clarify, Warfarin has been a huge benefit for your son, correct?

REPLY
@boomarang

reply to scottham777 In regards to Warfarin. I am a female of 94 years young. I would venture to say I have been on Warfarin/Coumadin for 30 years. Your doctor could be right. My doctor has tried to take me off Warfarin for a number of years. I always refuse. It is better the devil you do know than the one you don't. That is an old saying. For some people being on Coumadin can be a real hassle. Blood draws frequently to see how fast or slow your blood clots. Changes of dosage depending on your reading at that time. I found out through a trip to the ER that I was glad & so were the doctors that I was on Warfarin because I needed a SPINAL TAP immediately. Being on Warfarin they were able to immediately reverse the thinning effects of the Warfarin & proceed with my Spinal Tap. If I had been on the other newer blood thinners this could not have taken place immediately as needed in my case. Warfarin was a real PLUS for me at that time. I always keep it in mind. Warfarin as you probably know is a Rat Poison. It has kept this old rat alive for 30 years. I do not intend to give it up now. Your decision your body will be between you & your doctor & what he/she feels is best for your ongoing health & how confident you are in your doctor. Convenience might be a decision maker for you or the inconvenience of PTO/INR Blood draws. You might want to ask your doctor one question. Is the Medication you are on now Reversible incase of an emergency ?? I am sure you will make the right choice. If you decide on Warfarin & do not like it you can always go back to what you are on now. If by chance you are with Scripps or it is available to you they have an excellent Coumadin Clinic. You will be taken care of like you were one of the family. Best of health to you. Regards, boomarang

Jump to this post

Thank you! However, you are not a rat, but a 94 year old budding flower!!

REPLY

In reply to scottham777 Thank you for the most beautiful compliment. I will take it. At my age I take all I can get. Bless you and your kind words. Wishing you a very healthy and prosperous life. PS When you make your decision on your medication maybe you would like to share with me and the group. There are many intellectual minds in the Mayo Group always willing to share and learn. I find them most interesting.

REPLY
Please sign in or register to post a reply.