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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@JustinMcClanahan

Hello @katmorganus , you may notice I moved your discussion about Antiphospholipid Syndrome to this existing discussion:
– What Can I Expect with Antiphospholipid Syndrome (APS)?
https://connect.mayoclinic.org/comment/906055/.
I did this so you could read others' experiences with APS and meet members like @paktoledo, @mskeith, @kimbersue and @nugget84.

@katmorganus, you mentioned wanting to Connect with others who are experiencing similar side effects as you. If you are comfortable, do you mind sharing what some of your side effects are?

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Thank you

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@JustinMcClanahan

Hello @katmorganus , you may notice I moved your discussion about Antiphospholipid Syndrome to this existing discussion:
– What Can I Expect with Antiphospholipid Syndrome (APS)?
https://connect.mayoclinic.org/comment/906055/.
I did this so you could read others' experiences with APS and meet members like @paktoledo, @mskeith, @kimbersue and @nugget84.

@katmorganus, you mentioned wanting to Connect with others who are experiencing similar side effects as you. If you are comfortable, do you mind sharing what some of your side effects are?

Jump to this post

When I was in my late 20's. I woke up and thought my arm was asleep, and then it felt like it was on fire. By the time I made it to the closest hospital I had gone into shock. I had had a DVT. I had lost blood flow to my lower left arm for long enough that I ended being hospitalized for 3 months. And that 3 months I had to go through demarcation and tissue death of my fingers on my left hand. I had to watch my fingers "die" when the demarcation got to the furthest point it would get to and dry gangrene set in they amputated. I was on massive painkillers for those 3 months and then had to battle with opioid addiction in the early 2000s when not a lot of people knew what it was or how to treat that. Furthermore I through batteries of tests and they could not figure out what had caused the blood clot.

Then I went through physical therapy, and counseling. I had to learn how to readjust my entire life and learn that it was okay to be clumsy. Learning to live have massive nerve damage on my left hand.

I was diagnosed with the MFTHR gene mutation right away but it wasn't until 2 years ago that I was finally diagnosed with APS as well.

I think my two biggest side effects would be. I have chronic migraines that they are unable to treat, or have found an effective treatment for since most medications for migraines restrict blood flow which is detrimental when you have APS.

My second biggest side effect is the fact that I cannot fight any infection even the common cold will put me on my butt for at least 2 weeks.
I also have chronic sinus infections that I've had two surgeries to try to help correct, but I cannot fight off the simplest thing.

I guess just a list of third thing I've had probably about 12 surgeries in total, all due to problems with my body that APS combined with MFTHR gene mutation have caused.

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Hello everyone who has antibody syndrome. I've had this for about 30 years. It started with a blood clot in my neck (scary).I was quickly diagnosed with the syndrome and have been on warafin since then. My INRs are mostly stable between 2-3 and as far as diet goes there really hasn't been that much restriction. I don't eat kale but love spinich.i do have to watch myself there. I do hate the bruising. That for me is the worse part. Other than that I really haven't had any side effects. I guess my body is so used to taking it by now, it thinks it's normal.

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At age 58 I had a sudden onset pulmonary embolism (PE) in February 2021 that was (most likely) due to a knee subluxation suffered five weeks prior to the PE. I got great care at my hospital emergency room and intensive care unit, which included an intravenous clot-buster. I took Eliquis for six months, and it took me 12- to 18-months to get back to full strength. During that time I was having blood tests done and my cardiolipin antibody IgM was moderately high (16.4 in the emergency room and 33.0 in November 2022). In those same blood tests, my cardiolipin antibody IgG was in the normal range. Due to the moderately high IgM level, my hematologist put me on Eliquis, which I have been taking since November 2022.
In recent blood tests (July 2023 and October 2023), my cardiolipin antibody IgM levels were at the low end of the normal range (< 1.5 in both tests); however, my cardiolipin antibody IgG levels skyrocketed from the normal range in 2021 and 2022 to 109.2 (July 2023) and 107.8 (October 2023).
From those results, my hematologist diagnosed me with antiphospholipid syndrome and asked me to add a 81-mg aspirin to the Eliquis I am taking.
Otherwise, other "usual" blood tests (CBC, CMP) are normal, with one exception, and blood clotting tests done in December 2021 (in which I was not taking a blood thinner) were in the normal range, and blood clotting tests done in October 2023 revealed slower-than-normal blood clotting, which is not surprising given that I am taking Eliquis and a baby aspirin.
The one "exception" to my usual blood tests is that I have chronically low levels of lymphocytes. A lymphocyte subset panel blood test was done in October 2022 and July 2023. Those results showed below-normal levels of the various lymphocytes (CD3, CD4, CD8, CD19). So this gave me a diagnosis of lymphopenia. Neither my primary care physician nor the hematologist seem too concerned with the low levels of lymphocytes.
Otherwise, I am healthy and have no symptoms of illness. I am a White male who is a nonsmoker, nondrinker, vegetarian, and I am not overweight (BMI of 22).
Despite no physical symptoms, the diagnosis of antiphospholipid syndrome (along with lymphopenia) has impacted my mental outlook and dimmed my optimism as I head into retirement.
To pose a question, can I expect my cardiolipin antibody IgG levels to decrease to a normal level (or at least a moderately high level) at some point?
I am just wondering since my cardiolipin antibody IgM levels went from a moderately high level to a normal level over a 2-year, 8-month period. Can one expect the cardiolipin antibody IgG levels to do the same?

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@jkrobertson

At age 58 I had a sudden onset pulmonary embolism (PE) in February 2021 that was (most likely) due to a knee subluxation suffered five weeks prior to the PE. I got great care at my hospital emergency room and intensive care unit, which included an intravenous clot-buster. I took Eliquis for six months, and it took me 12- to 18-months to get back to full strength. During that time I was having blood tests done and my cardiolipin antibody IgM was moderately high (16.4 in the emergency room and 33.0 in November 2022). In those same blood tests, my cardiolipin antibody IgG was in the normal range. Due to the moderately high IgM level, my hematologist put me on Eliquis, which I have been taking since November 2022.
In recent blood tests (July 2023 and October 2023), my cardiolipin antibody IgM levels were at the low end of the normal range (< 1.5 in both tests); however, my cardiolipin antibody IgG levels skyrocketed from the normal range in 2021 and 2022 to 109.2 (July 2023) and 107.8 (October 2023).
From those results, my hematologist diagnosed me with antiphospholipid syndrome and asked me to add a 81-mg aspirin to the Eliquis I am taking.
Otherwise, other "usual" blood tests (CBC, CMP) are normal, with one exception, and blood clotting tests done in December 2021 (in which I was not taking a blood thinner) were in the normal range, and blood clotting tests done in October 2023 revealed slower-than-normal blood clotting, which is not surprising given that I am taking Eliquis and a baby aspirin.
The one "exception" to my usual blood tests is that I have chronically low levels of lymphocytes. A lymphocyte subset panel blood test was done in October 2022 and July 2023. Those results showed below-normal levels of the various lymphocytes (CD3, CD4, CD8, CD19). So this gave me a diagnosis of lymphopenia. Neither my primary care physician nor the hematologist seem too concerned with the low levels of lymphocytes.
Otherwise, I am healthy and have no symptoms of illness. I am a White male who is a nonsmoker, nondrinker, vegetarian, and I am not overweight (BMI of 22).
Despite no physical symptoms, the diagnosis of antiphospholipid syndrome (along with lymphopenia) has impacted my mental outlook and dimmed my optimism as I head into retirement.
To pose a question, can I expect my cardiolipin antibody IgG levels to decrease to a normal level (or at least a moderately high level) at some point?
I am just wondering since my cardiolipin antibody IgM levels went from a moderately high level to a normal level over a 2-year, 8-month period. Can one expect the cardiolipin antibody IgG levels to do the same?

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Welcome to Mayo Clinic Connect @jkrobertson ! I’m so glad you found us! On MCC people share their health concerns and stories and share information. I’m asking members @katmorganus @paktoledo @reets70 @nicholas94 @kimbersue if they would join the conversation . Hopefully they will share their journey with APS.
@jkrobertson can i ask how you found Mayo Clinic Connect?

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I am here Becky! I was diagnosed in 2017. My range is also 2-3. Found the Coumadin cookbook from ebay that is really helpful. About 6 dollars used.

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@becsbuddy

Welcome to Mayo Clinic Connect @jkrobertson ! I’m so glad you found us! On MCC people share their health concerns and stories and share information. I’m asking members @katmorganus @paktoledo @reets70 @nicholas94 @kimbersue if they would join the conversation . Hopefully they will share their journey with APS.
@jkrobertson can i ask how you found Mayo Clinic Connect?

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"…can i ask how you found Mayo Clinic Connect?"
Quite simply, I was doing research (google search) on antiphospholipid syndrome and came across the site.

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