Eliquis for Antiphospholipid syndrome? - Hughes Syndrome A...

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Eliquis for Antiphospholipid syndrome?

LavenderLemonade profile image
17 Replies

I had a pulmonary embolism and was prescribed Eliquis 5 mg 2xday. Does anyone else take Eliquis for pulmonary embolism? Are you experiencing any side effects?

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LavenderLemonade
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17 Replies
Star13 profile image
Star13

Do you have APS? The treatment for a PE without APS and for those of us who have APS is very different.

LavenderLemonade profile image
LavenderLemonade in reply toStar13

Oh,sorry. Yes I also have APS.

Star13 profile image
Star13 in reply toLavenderLemonade

Eliquis is contraindicated for anyone with APS, all DOACs are. They should have put you on warfarin or heparin injections. Were they aware of your APS dx?

Adn28 profile image
Adn28

I underwent a total abdominal hysterectomy this past Dec and the Dr. put me on Eliquis for 4 weeks, KNOWING that I have APS. I specifically asked if that would be safe and he said yes. 🤦‍♀️

myarabella profile image
myarabella

Hi there. If you have APS, Eliquis is absolutely contraindicated. Your doctor should know this. There is a black box lable advising against Eliquis for anyone with APS.. Please research this and Do Not use it. An alternative would be Lovenox. I have been down this road and have extensive knowledge about the subject matter. Take care.

itasara profile image
itasara in reply tomyarabella

I take Eliquid the same as you, but I take it for atrial fibrillation. I have not had any problems that I can think of as far as Eliquis goes. The fact that it is a brand name and there is no generic for it. I would say it’s pretty pricey, as it has gotten me into the donut hole. I take three other brand name meds.

myarabella profile image
myarabella in reply toitasara

I took it too, and had a DVT. Please get on something else if you ha e APS. The medical journals and black box la eling is well documented. Just because you are doing well does't mean you will not have a clotting event. I suggest you at least discuss this with your doctor, who clearly needs to do more research. Best wishes.

myarabella profile image
myarabella

Also, did you getvthe PE before pr after being put on Eliquis? Either way, it is contraindicated, but especially for those of us with APS. Your doctor needs to do his/her research. Maybe find a new doctor.

LavenderLemonade profile image
LavenderLemonade in reply tomyarabella

I had the PE before the diagnosis of APS. Thank you everyone for your comments. I did discuss this since with my hematologist and her answer is that my labs in 2021 showed only one of the antibodies to be mildly elevated (beta 2 glycoprotein at 31 - clotting risk over 20) In the past they did not use anything other than warfarin for APS, BUT newer information instructs to not use Eliquis or Xarelto in triple positive APS, which I do not have. (all three APS antibodies abnormal) In those with APS they use treatment dose DOAC (direct oral anticoagulant agents, such as Eliquis). I am on that dose. They now have MANY patients on DOACs such as Eliquis with APS and fortunately they are all doing well.

Star13 profile image
Star13 in reply toLavenderLemonade

They don’t put warnings on PIL’s for no reason! If one of those people with APS dies while on that drug or suffers a serious consequence like a life altering event that Dr will be struck off. I hope that Dr is explaining to each patient the risks they are taking when there are perfectly safe alternatives.

Thick_Blood profile image
Thick_Blood

listen to this group that is a poorly informed doctor, I had this conversation with my hematologist, it’s contraindicated and there should be no situation that anyone with any phospholipid antibodies syndrome is on Eliquis

"Eliquis (apixaban) and other direct oral anticoagulants (DOACs) are generally not recommended as first-line treatments for antiphospholipid syndrome (APS) or APS-related clots.

This is because APS is often associated with high-risk clotting situations, and there's limited data on the safety and efficacy of DOACs in treating APS-related thrombosis. Therefore, traditional anticoagulants such as warfarin or heparin are typically preferred in this context.

Warfarin has been the mainstay of treatment for APS-associated thrombosis for many years. It's effective and has been studied extensively in this population. Heparin, both unfractionated and low molecular weight, is also commonly used, especially in acute situations or during pregnancy when warfarin is contraindicated.

In summary, while Eliquis is an anticoagulant effective for certain conditions, it's not typically recommended as a first-line treatment for APS-related clotting due to the lack of extensive clinical data supporting its use in this specific context."

KellyInTexas profile image
KellyInTexasAdministrator

I was prescribed elequis ( high dose ) and clotted very quickly. It did not work at all.

henyrjonze profile image
henyrjonze

In the US, Eliquis is an absolute NO-NO for APS patients.

Ignacio182 profile image
Ignacio182

My Hematologist tried to put me on Eliquis here in the U.S. and I refused.We must do our own research to keep safe

Tofino5 profile image
Tofino5

I have been on Eliquis for over 7 years now and I am doing great, so well - much better than I ever did for the 10 1/2 years I was on warfarin. Warfarin is almost always the first med to try, but like everything else in life, it isn’t one size fits all for every person and situation.

LavenderLemonade profile image
LavenderLemonade in reply toTofino5

Thanks for your comment! Reassuring to hear of one more person doing well on Eliquis! It’s been working fine for me for over 3 years.

Tofino5 profile image
Tofino5 in reply toLavenderLemonade

I’m glad your doing well. It is very nice to be able to eat veg without worry :-).

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