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 you

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nugget84 | @nugget84 | Apr 22, 2023
In reply to @becsbuddy "@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..." + (show)
@becsbuddy

@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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No I’ve been waiting for a “care plan” for 2-3 weeks from multiple people. Sent messages and followup requests but no reply.

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mskeith | @mskeith | Apr 22, 2023
In reply to @becsbuddy "@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..." + (show)
@becsbuddy

@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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I am on a blood thinner, and that is all that has been diagnosed for me? I suffer from anxiety and depression, PTSD. I’ve lost both of my children and I have other health issues, so I just don’t know what the Doctor Who diagnosed me with APS can do for me.

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mskeith | @mskeith | Apr 22, 2023
In reply to @becsbuddy "@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..." + (show)
@becsbuddy

@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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My doctor has not said anything about holding off on treating me? I was given a blood thinner to take for the rest of my life. That seems to be my doctors solution to my APS.

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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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Yes you need to be treated and on medication, you will be taking for the rest of your life! That’s what I was told for myself, and I have APS ! I do not have a lot of information about APS which is unfortunate!

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mskeith | @mskeith | Apr 22, 2023

Thank you for the information. I am just taking my medication’s to monitor my APS. I’m just on a blood thinner. I don’t know how else to monitor my APS.

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beesmom | @beesmom | Apr 23, 2023

I was diagnosed with APS 30 years ago and advised to take a baby aspirin everyday. My hematologist also prescribed Eloquis if I will be traveling for more than 2 hours to avoid blood clots from being sedentary for that long. However, the Eloquis commercial has a fine print advisory stating that APS patients should not take it. Will be seeing my Doctor next week and will ask him about this.

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1 reply
ilikelonnie1 | @ilikelonnie1 | Apr 23, 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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Talk to your dr. Warfarin is standard for APS

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1 reply
mskeith | @mskeith | Apr 23, 2023
In reply to @ilikelonnie1 "Talk to your dr. Warfarin is standard for APS" + (show)
@ilikelonnie1

Talk to your dr. Warfarin is standard for APS

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I will talk to my doctor I see her next month. Thank you for your reply!

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paktoledo | @paktoledo | Apr 24, 2023
In reply to @beesmom "I was diagnosed with APS 30 years ago and advised to take a baby aspirin everyday...." + (show)
@beesmom

I was diagnosed with APS 30 years ago and advised to take a baby aspirin everyday. My hematologist also prescribed Eloquis if I will be traveling for more than 2 hours to avoid blood clots from being sedentary for that long. However, the Eloquis commercial has a fine print advisory stating that APS patients should not take it. Will be seeing my Doctor next week and will ask him about this.

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Mayo Clinic stated that Coumadin , or Warfarin, is the drug of choice for treating ASP. That's what my doctor in Rochester said. I was diagnosed in Oct, 2017.
I don't know about Eloquis,.
Maybe you could seek out a second opinion from a MD who specializes in ALS. I see a Rheumatologist, because she also treats me for lupus.
Hope this helps! Pat

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