What can I expect with Antiphospholipid Syndrome (APS)?

Posted by sunshine71 @sunshine71, Nov 23, 2022

I’ve recently been diagnosed with APS and have been prescribed hydroxychloroquine. I have a history of a pulmonary embolism. I’ve read the side effects of this medication and it truly has me afraid to take it. What can I expect with this condition and medication? I know everyone’s body is different and reacts to medication differently, I’m just trying to get some insight on what others might be experiencing. Thank you

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Colleen Young, Connect Director | @colleenyoung | Dec 11, 2022

In reply to @mskeith "Anyone with APS on here ?" + (show)

Welcome, @mskeith. I moved your message about treatment options to this existing discussion:
– What can I expect with Antiphospholipid Syndrome (APS)?: https://connect.mayoclinic.org/discussion/aps/

I did this so you can easily connect with members like @nicholas94 @perematharanseridaran and @sunshine71. You may also be interested in these related discussions:
– Anyone have experience with Antiphospholipid syndrome (APS)? https://connect.mayoclinic.org/discussion/antiphospholipid-syndrome-hughes/
– Antiphospholipid: Weird symptoms, don't understand what’s going on: https://connect.mayoclinic.org/discussion/weird-symptoms-no-clear-understanding-of-whats-going-on/

What is your experience with APS? Is this a new diagnosis for you?

mskeith | @mskeith | Dec 11, 2022

In reply to @colleenyoung "Welcome, @mskeith. I moved your message about treatment options to this existing discussion: – What can..." + (show)

I was diagnosed a year ago with APS. I’m on Eliguis and just don’t feel well and I’m scared ! I’m on other meds too! Not sure what to do about how I feel and what to think about this rare disease. Just lost…

shani | @shani | Dec 13, 2022

In reply to @mskeith "Anyone with APS on here ?" + (show)

I am! but I’m a newbie, so not much to add at this point except that I’m taking Pradaxa because I’ve also had two strokes, and am so far..5 years..very happy with that. Eloquis should be outlawed and is a non discussion!

mskeith | @mskeith | Dec 13, 2022

Why should eloquis be outlawed ? Should I request another blood thinner ? I’ve had a blood clot on my spleen and worry every minute of everyday of having another blood clot !

beesmom | @beesmom | Dec 14, 2022

My hemotologist/oncologist prescribed Eloquis to me for long seated trips. A recent Eloquis ad advised against anyone with APS to take it. What is the problem with the drug. Have not taken it yet.

beesmom | @beesmom | Dec 14, 2022

Is anyone else afflicted with APS a DES daughter. My mother took DES in 1957 to avoid another miscarriage. Recently I discovered that the offspring of a mother who took this drug were more likely to have an autoimmune disorder. I’m trying to figure out whether this is the cause of my rare condition.

shani | @shani | Dec 14, 2022

In reply to @mskeith "Why should eloquis be outlawed ? Should I request another blood thinner ? I’ve had a..." + (show)

You have APS which ‘’breeds’’ clots. Why are you NOT on an anticoagulant? I’d be worried too. Take one which doesn’t cause side effects….doesn’t matter which one, as long as it works FOR you. Idea is to improve YOUR life. Re eloquis…. Too many side effects which are ignored by manufacturer and med is touted as better than others, but unsupported by facts.

libbyh | @libbyh | Dec 14, 2022

In reply to @beesmom "Is anyone else afflicted with APS a DES daughter. My mother took DES in 1957 to..." + (show)

I am a DES daughter, too and have APS. I was diagnosed in 2008. I don’t recall if my hematologist said DES was a factor. I have annual check up in March and will ask him (if I can remember to do so).

mskeith | @mskeith | Dec 14, 2022

In reply to @shani "You have APS which ‘’breeds’’ clots. Why are you NOT on an anticoagulant? I’d be worried..." + (show)

I don’t know why I am not on an anticoagulant ? Eliquis is what my doctor put me on last June when I was hospitalized for a blood clot. I don’t have another doctor appointment until May 2023. Should I reschedule for an earlier appointment ?