That Other Illness- Antiphospholipid Syndrome

I know I haven’t talked about my other illness a whole lot. I guess it’s about time I start explaining what it is. In addition to Lupus, I have Antiphospholipid Syndrome. APS is an autoimmune disease which can cause frequent clotting in arteries and veins and/or miscarriages. The clotting results from the presence of proteins in the blood called anti-phospholipid autoantibodies (commonly called aPL) formed against the person’s own tissues. These autoantibodies interfere with coagulation, leading to increased clot formation or thrombosis (in which blood flow stops due to a clot). It is a hypercoagulable state and requires lifelong treatment, usually with anticoagulants such as Warfarin or Heparin. Though treatments should be decided upon with your doctors. Only they will know which treatment plan is best for you based upon your presentation of the condition, your own personal situation, and other varying factors. 

Sometimes APS is referred to by other names. I have 5 different doctors and I have heard each one of them call it various things. I’ve even one of them call APS several different things during the same appointment.

  • Hughes Syndrome
  • Anticardiolipin Syndrome
  • Lupus Anticoagulant Syndrome
  • Beta2Glycoprotien Syndrome
  • Sticky Blood
  • APS
  • APLS
  • LA Syndrome

While men can get APS, just like with most autoimmune conditions women are at a much more increased risk for developing APS. It can occur at any age but it is most commonly diagnosed between the ages of 30-40. It is also more commonly seen in people with Systemic Lupus as a secondary condition. However, it can occur outside of this population as a primary condition as well.

There are some major symptoms of APS. Blood clots and as a result heart attacks, strokes, Pulmonary Embolism, DVTs and  Miscarriages, are all common Clinical symptoms of APS. Not everyone that presents with a clotting event has a large blood clot as their presenting event. I did not. My presenting clotting event was a clot in my right eye called a Branch Retinal Vein Occlusion. This is a small clot in one of my retinal veins. It has left me with a small area of blindness in my right eye. I also had a miscarriage that my doctors are pretty certain was caused by a combination of APS and Lupus. This is the reason I am on Warfarin and the reason I have to get my INR checked so often. I will be on anticoagulants for the rest of my life. It may not always be Warfarin. They may eventually approve one of the newer ones for my condition, or they may decide some other anticoagulant is a better fit for my situation. Only time will tell though.

Most of the time APS is diagnosed after a presenting clotting event or after several miscarriages. Patients with the antiphospholipid syndrome can have a variety of antibodies to molecules called phospholipids in their blood. These antibodies include DVRL/RPR (a syphilis test that can be falsely positive in these patients), lupus anticoagulant, prolonged PTT, beta 2 glycoprotein I antibodies and anticardiolipin antibody. To be diagnosed with definite APS a person needs two positive test results spaced at least 12 weeks apart. Antibody levels can fluctuate over time and you may test positive for one type of antibody one time and another type of antibody another time.

For more information on APS please visit these links:

American College of Rheumatology- Antiphospholipid Syndrome

Hughes Foundation for people with antiphospholipid antibodies

Mayo Clinic-Antiphospholipid Syndrome

 

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15 thoughts on “That Other Illness- Antiphospholipid Syndrome

    1. Nance,
      It’s overwhelming at times (and part of why I started seeing a therapist), but as long as we can keep my blood anticoagulated enough this part of my illnesses largely fades to the background. In my case it is secondary to my Lupus. It is the reason I am at my PCP’s office so often though. It will be interesting to see if in the future one of the newer anticoagulants gets approved for use with my condition. Some hematologists and doctors are allowing their APS patients to switch to them already. Mine said he wouldn’t allow it until more studies had been done on how it works in our population. I’m a bit of an anomoly even within APS though. Instead of normal clots I have microclots. Most patients with APS have large clots ie strokes, heart attacks DVTS/Pulmonary Embolisms. Not me, I have small clots that get in small veins like the ones I’ve gotten in my retinal veins, I’ve had a few classic TIAs, and I also get small clots under my fingernails from time to time but those largely go away when we have my INR in the supratherapeutic range we have it in. I hope you are having a great Memorial Day weekend.

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      1. BLESS YOUR HEART and SOUL!!! So glad to have gotten to know you and your story, and I appreciate how you’re working through the mayhem that life has handed you. You’re incredible!! Have a great Mem’l Day weekend too!

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      2. Thanks. I have welcomed the distractions that my blog and Covey View are offering me. They are occupying my brain enough to keep it busy so I’m not completely obsessing over the craziness of everything anymore. 🙂

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      3. I’m finding the same thing!!! We’re all helping each other. 🙂

        I just read “Roller Coaster” to my hubby and he asked if I can post it on my blog too. Do you know if this is an ok thing to do? I would think so, since on Covey View, I’m listed as Nance, not The Moments Matter. What do you think??

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      4. I know Maria has reblogged things, and if you wrote it, by all means post it on your own blog! You could comment that you wrote it originally for CV if you wanted to show recognition of it’s original posting place. Pingbacks are cool too. 🙂

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  1. Sorry to hear about it buddy. Must be very painful to fight it all. Thanks for sharing and making the world around you more aware. Stay blessed and try to live every moment happy. 🙂

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    1. It can be overwhelming at times, but working closely with my doctors and educating myself about my conditions allows me to stay on top of things. I’m hopeful that I can make the best out of my health going forward now that we know what we are dealing with. Hope you are having a great start to your week! 🙂

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      1. It’s a learning curve, it’s taken me a while to get to this point in this process. The first few months of this process I was a miserable soul to be around. haha It’s all part of the process though and I keep trying to tell myself to just keep moving forward that things will and are getting better.

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