1. < Autoimmune Diseases

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 yoh

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paktoledo | @paktoledo | May 4, 2023
In reply to @mskeith "Are you very tired all the time ? How much do you worry about forming blood..." + (show)
@mskeith

Are you very tired all the time ? How much do you worry about forming blood clots and strokes ?

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My answer to your question got posted in the wrong area. I keep occupied so I don't have time to worry. I have had both a stroke and a blood clot in my lung!
I exercise a lot and that seems to help my energy levels. I do try to get in 3 times a week water aerobics and 2 classes of strength training . I take 1 hr nap in the afternoon.
I do worry a little, but also know I can only do the best I can. Hope this helps, Pat!

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1 reply
paktoledo | @paktoledo | May 4, 2023
In reply to @2cats "Which blood thinner are you taking?" + (show)
@2cats

Which blood thinner are you taking?

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Coumadin. First choice per Mayo Clinic.

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mskeith | @mskeith | May 4, 2023
In reply to @paktoledo "My answer to your question got posted in the wrong area. I keep occupied so I..." + (show)
@paktoledo

My answer to your question got posted in the wrong area. I keep occupied so I don't have time to worry. I have had both a stroke and a blood clot in my lung!
I exercise a lot and that seems to help my energy levels. I do try to get in 3 times a week water aerobics and 2 classes of strength training . I take 1 hr nap in the afternoon.
I do worry a little, but also know I can only do the best I can. Hope this helps, Pat!

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Thank you !

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1 reply
paktoledo | @paktoledo | May 4, 2023
In reply to @mskeith "Thank you !" + (show)
@mskeith

Thank you !

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You are welcome. My INR was high today, 4.4. I had dental work done and took a lot of Tylenol. Apparently, it cause I NRs( bleeding time) to increase. So, be careful. Pat

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1 reply
mskeith | @mskeith | May 4, 2023
In reply to @paktoledo "You are welcome. My INR was high today, 4.4. I had dental work done and took..." + (show)
@paktoledo

You are welcome. My INR was high today, 4.4. I had dental work done and took a lot of Tylenol. Apparently, it cause I NRs( bleeding time) to increase. So, be careful. Pat

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What is INR ?

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mskeith | @mskeith | May 4, 2023

I’m just a tired wreck ! I want some relief from APS ! 🤷🏻‍♀️

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cornwalluk | @cornwalluk | May 5, 2023
In reply to @perematharanseridaran "Yes, I am worried to start warfarin. With the diet restrictions and vit k level adjustments...." + (show)
@perematharanseridaran

Yes, I am worried to start warfarin. With the diet restrictions and vit k level adjustments. I was also chatting with a mate who is a doctor in Australia, he was telling me that European countries have been already giving another type of anticoagulant for APS, which has lesser restrictions and lesser side effects.

Pls enlighten me.

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I was worried to let my daughter start Warfarin (she's only 14), and she was on Riveroxban for a few months, for a PE, now Triple Positive APS (and Lupus), they wanted her to change to Warfarin. She began by 2 weeks of daily blood tests at the local hospital which wasn't great, that was over Easter holidays, now she is weekly or fortnightly blood tests. Her INR is stable, we make sure that she eats spinach, kiwi fruit, spring onions or asparagus etc every day, but not too much so we are aiming to keep her Vit K levels stable. It's very early days for her, and I'm sure the levels will be effected by various things.. but we think one day at a time! Best of luck with the transfer to Warfarin, I know its super scary, I fought like crazy and got 2 second opinions, but it seemed to us that the was better protection for anyone with APS.

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Raddy 01@ | @nicholas94 | May 6, 2023

Hello all my APS friends .Hope all of you are having a better day .It’s sad when I read a young one started warfarin .I’m pretty sure you all have to intake 100mcg daily which is 10 points of vitamins K .It’s is absolutely scary but I glad you’re monitoring Try buying a the Coumadin cookbook or the complete Vitamin K counter for warfarin users.It will make preparing meals easier.As I said in my post warfarin is the only choice for Antiphoslipid.The doctors tell us don’t let Coumadin/warfarin controls you .Unfortunately it does control. my lifestyle.Good luck all and be well.

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1 reply
paktoledo | @paktoledo | May 6, 2023
In reply to @nicholas94 "Hello all my APS friends .Hope all of you are having a better day .It’s sad..." + (show)
@nicholas94

Hello all my APS friends .Hope all of you are having a better day .It’s sad when I read a young one started warfarin .I’m pretty sure you all have to intake 100mcg daily which is 10 points of vitamins K .It’s is absolutely scary but I glad you’re monitoring Try buying a the Coumadin cookbook or the complete Vitamin K counter for warfarin users.It will make preparing meals easier.As I said in my post warfarin is the only choice for Antiphoslipid.The doctors tell us don’t let Coumadin/warfarin controls you .Unfortunately it does control. my lifestyle.Good luck all and be well.

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Do you have any cookbooks to use for Vitamin k count of foods?
Could you please make a recommendation? Thank you! Pat

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