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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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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 11 7:36pm
In reply to @vtd11 "For 20 yrs Ive had APS, 13 DVTS. Ive been on Warfarin, with inr at3.25 (Dr..." + (show)
@vtd11

For 20 yrs Ive had APS, 13 DVTS. Ive been on Warfarin, with inr at3.25 (Dr wants me at 3) Ive also been on Fondaparinux 7.5mg injections. I ve broke through both with DVTs. It seems that blood Thiners are not working, none of my Drs have known anyone with this problem. I was referred to Mayo Clinc BUT 'they do not have a thrombose clinic anymore'. So, now have been referred to a specialist in Orlando. One of my Drs said 'Im sitting on a time bomb'. Has anyone one else had this problem or has heard of this? Now, Im taking Xeralto. which is contraindicated for APS. Im also taking 2 aspirin a day on my own.

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Hi @vtd11, I moved your post to this discussion where you can connect up with other APS members like @nicholas94 @reets70 @mskeith and many others who share a similar diagnosis. Click the link to read previous posts and connect.

- What can I expect with Antiphospholipid Syndrome (APS)?
https://connect.mayoclinic.org/discussion/aps/

REPLY
vtd11 | @vtd11 | Aug 13 1:09pm

Yes, Ive had APS for about 20yrs. Ive had 12 DVTs in rt leg and 1 in the other. I was on coumadin for years. I was therapeutic with INR at 3.25 but still had 2 DVTs. I was then on Fondaparinux 7.5 injections and still got a clot. It seems I am breaking through on blood thinners. My Dr referred me to Mayo clinic but I was told they do not have a thrombose clinic anymore. My Dr put me on Xeralto, which is contraindicated for APS, but running out of options. I also take 2 aspirin a day. Now, Im referred to a specialist in Orlando Fl. Id prefer Mayo Clinic even if I needed to go cross state. My Dr has not known of this happening to his other patients. Has anyone else heard of having blood clots while on blood thinners?

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