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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mskeith | @mskeith | Apr 21, 2023
In reply to @colleenyoung "Bienvenidos, @encarni. I moved your message to this existing discussion: – What can I expect with..." + (show)
@colleenyoung

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

I did this so you can read previous helpful posts and connect easily with other members who have experience with antiphospholipid syndrome (APS) like @sunshine71 @nicholas94 @cornwalluk @nicholas94 @paktoledo @lininmd @hopeful2023 @wig @uytna @shani @beesmom and others.

Having lived with antiphospholipid syndrome for over 10 years, I'm sure you have much experience to offer members. What symptom do you find the most challenging?

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I’m very tired, exhausted too! I have APS and I’m on medication and being seen by an oncologist. What do I do ? Or should I say what can a doctor do for me and my extreme fatigue?

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1 reply
nugget84 | @nugget84 | Apr 22, 2023
In reply to @mskeith "I’m very tired, exhausted too! I have APS and I’m on medication and being seen by..." + (show)
@mskeith

I’m very tired, exhausted too! I have APS and I’m on medication and being seen by an oncologist. What do I do ? Or should I say what can a doctor do for me and my extreme fatigue?

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I’m sorry you feel awful. I don’t have a good answer I was just diagnosed and not yet being treated. I’d like to follow your post though.

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2 replies
nugget84 | @nugget84 | Apr 22, 2023
In reply to @shani "You have APS which ‘’breeds’’ clots. Why are you NOT on an anticoagulant? I’d be worried..." + (show)
@shani

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.

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I was diagnosed a month ago but they didn’t prescribe me anything. Should I be concerned? I figured it was just something that would exist but didn’t need treatment. Yikes this thread has me a little anxious.

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2 replies
Raddy 01@ | @nicholas94 | Apr 22, 2023

APS is a diagnosis not to be taken likely I’m in my 5th year and it’s been scary for me as I mentioned in my post I’m seeing a Hematologist and a Rheumatologist Still taking Plaquenil and 90 mg of warfarin weekly It’s quite nerve wrecking for me but so far I have been stable within my range 2-3 Acceptance is an achievement and I’m not there yet .Sorry.Plaquenil is not for blood thinner I suggest you speak to your oncologist or hematologist about a blood thinner .The only medication I know of for APS warfarin .I’m from New York Please you all speak up to your doctors about APS and the right medicines.Good luck and thank you .

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1 reply
mskeith | @mskeith | Apr 22, 2023
In reply to @nugget84 "I’m sorry you feel awful. I don’t have a good answer I was just diagnosed and..." + (show)
@nugget84

I’m sorry you feel awful. I don’t have a good answer I was just diagnosed and not yet being treated. I’d like to follow your post though.

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Of course, follow me and I’ll continue to post what’s going on w/me. Im so tired of being tired and not feeling well ! Im also on an antidepressant, anxiety, medication, and Zetia. I’ve also been told by my regular doctor that I need to take vitamin D3 with calcium and a multivitamin. Im 62 and thought I was in pretty good health !

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mskeith | @mskeith | Apr 22, 2023

I am on eloquis, but that seems rare, because everybody else I’ve heard from with APS is not taking eloquis?

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mskeith | @mskeith | Apr 22, 2023
In reply to @nicholas94 "APS is a diagnosis not to be taken likely I’m in my 5th year and it’s..." + (show)
@nicholas94

APS is a diagnosis not to be taken likely I’m in my 5th year and it’s been scary for me as I mentioned in my post I’m seeing a Hematologist and a Rheumatologist Still taking Plaquenil and 90 mg of warfarin weekly It’s quite nerve wrecking for me but so far I have been stable within my range 2-3 Acceptance is an achievement and I’m not there yet .Sorry.Plaquenil is not for blood thinner I suggest you speak to your oncologist or hematologist about a blood thinner .The only medication I know of for APS warfarin .I’m from New York Please you all speak up to your doctors about APS and the right medicines.Good luck and thank you .

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I am on Eliquis and I see my oncologist next month and I think I need to be on a different blood thinner? I feel so tired and so unhealthy. I was diagnosed with APS last year after I suffered a blood clot on my spleen, and was hospitalized for a week.

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2 replies
mskeith | @mskeith | Apr 22, 2023
In reply to @nugget84 "I was diagnosed a month ago but they didn’t prescribe me anything. Should I be concerned?..." + (show)
@nugget84

I was diagnosed a month ago but they didn’t prescribe me anything. Should I be concerned? I figured it was just something that would exist but didn’t need treatment. Yikes this thread has me a little anxious.

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I would think you need to be on a blood thinner. APS apparently causes blood clots and strokes and that’s what I’ve been told by my doctor. An APS diagnosis is not to be taken lightly!

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Raddy 01@ | @nicholas94 | Apr 22, 2023
In reply to @mskeith "I am on Eliquis and I see my oncologist next month and I think I need..." + (show)
@mskeith

I am on Eliquis and I see my oncologist next month and I think I need to be on a different blood thinner? I feel so tired and so unhealthy. I was diagnosed with APS last year after I suffered a blood clot on my spleen, and was hospitalized for a week.

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I know Eliquis is a blood thinner but strongly believed not to treat APS Talk to your doctor if you’re thinking of other blood thinners .Be well

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Apr 22, 2023
In reply to @nugget84 "I’m sorry you feel awful. I don’t have a good answer I was just diagnosed and..." + (show)
@nugget84

I’m sorry you feel awful. I don’t have a good answer I was just diagnosed and not yet being treated. I’d like to follow your post though.

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@nugget84 I’m so sorry to hear that you’ve been diagnosed with an autoimmune disease.
https://www.mayoclinic.org/diseases-conditions/antiphospholipid-syndrome/diagnosis-treatment/drc-20355836
Did your doctor explain why they are holding off on treatment?

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