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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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encarni | @encarni | May 1, 2023
In reply to @colleenyoung "Welcome @kimbersue, I look forward to getting to know more about your story living with antiphospholipid..." + (show)
@colleenyoung

Welcome @kimbersue, I look forward to getting to know more about your story living with antiphospholipid syndrome (APS) for such a long time. To help you connect with other APS members like @sunshine71 @skymya @wittycjt @elizabeth513 @nicholas94 @lee7766 @huffman @elaine1809 @brendamorales1, I moved your post to this active discussion:

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

As you read through some of the previous posts, I'm confident that you'll have experiences to share and nuggets of wisdom.

Kim, are you on treatment now? How are your symptoms managed?

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@kimbersue ¿ Y cuál es su sintomatología? Estoy haciendo una tesis sobre síndrome antifosfolipido y yo también lo padezco,pero no conozco a muchas personas que lo tengan. Si le apetece compartir su experiencia conmigo. Yo suelo tener cansancio, y dolor articular.
Un saludo

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wig | @wig | May 1, 2023

I take eliquis/apixban because I didn't want to take Warfarin although advised by my doctor. I didn't like the limitations on diet and requirements for blood tests. Eliquis is a newer drug and and more user friendly. But I wouldn't want to advise you because my doctor says Warfarin has been proven to be better for APS. I hope your stroke wasn't severe.

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wig | @wig | May 1, 2023
In reply to @2cats "I have been on low dose aspirin for many years. Had a stroke in January 2023..." + (show)
@2cats

I have been on low dose aspirin for many years. Had a stroke in January 2023 and prescribed Lipitor and Plavix. Now Dr wants me to take Warfarin instead of Plavix. Any thoughts

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I forgot, I also take lipitor in addition to the eliquis

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angieboo1973 | @angieboo1973 | May 3, 2023

Hi I am new here does anyone have a high beta 2 igm and aps syndrome

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | May 3, 2023
In reply to @angieboo1973 "Hi I am new here does anyone have a high beta 2 igm and aps syndrome" + (show)
@angieboo1973

Hi I am new here does anyone have a high beta 2 igm and aps syndrome

Jump to this post

Welcome @angieboo1973. To help you connect with others talking about APS, I moved your post to this existing discussion:
- What can I expect with Antiphospholipid Syndrome (APS)? https://connect.mayoclinic.org/discussion/aps/

Here you can read previous posts and join the conversation with @skymya @wittycjt @elizabeth513 @nicholas94 @lee7766 @huffman @elaine1809 @brendamorales1 @huffman @beesmom and more.

Angie, when were you diagnosed with antiphospholipid syndrome? How are you doing?

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mskeith | @mskeith | May 4, 2023
In reply to @angieboo1973 "Hi I am new here does anyone have a high beta 2 igm and aps syndrome" + (show)
@angieboo1973

Hi I am new here does anyone have a high beta 2 igm and aps syndrome

Jump to this post

I have APS ! It is a very frustrating disease! I’m on blood thinner and don’t even think I’m on the correct blood thinner. I see my doctor next week again an oncologist to have a check up and possibly I’m going to request a new medicine.

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2 replies
paktoledo | @paktoledo | May 4, 2023
In reply to @mskeith "I have APS ! It is a very frustrating disease! I’m on blood thinner and don’t..." + (show)
@mskeith

I have APS ! It is a very frustrating disease! I’m on blood thinner and don’t even think I’m on the correct blood thinner. I see my doctor next week again an oncologist to have a check up and possibly I’m going to request a new medicine.

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According to Mayo clinic, the proper blood thinner is Coumadin for your condition. Hope this helps. I have has this condition since 2017. Feel free to post more questions, if you need too. We are all here to support one another. Hope this helps.Pat

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1 reply
mskeith | @mskeith | May 4, 2023
In reply to @paktoledo "According to Mayo clinic, the proper blood thinner is Coumadin for your condition. Hope this helps...." + (show)
@paktoledo

According to Mayo clinic, the proper blood thinner is Coumadin for your condition. Hope this helps. I have has this condition since 2017. Feel free to post more questions, if you need too. We are all here to support one another. Hope this helps.Pat

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

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1 reply
2cats | @2cats | May 4, 2023
In reply to @mskeith "I have APS ! It is a very frustrating disease! I’m on blood thinner and don’t..." + (show)
@mskeith

I have APS ! It is a very frustrating disease! I’m on blood thinner and don’t even think I’m on the correct blood thinner. I see my doctor next week again an oncologist to have a check up and possibly I’m going to request a new medicine.

Jump to this post

Which blood thinner are you taking?

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2 replies
paktoledo | @paktoledo | May 4, 2023

Sometimes I am tired. I just need to get enough rest. But, I exercise a lot and this seems to help!
I beleive,I have already had a stroke with full recovery.
I have had a blood clot in my long also!
But, I believe we all have a set number of days on this earth.
We should take each moment and live it to it's fullest!
I don't have time to worry much. I try to keep myself occupied so I worry a lot less. God Bless! Pat

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