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Anyone have experience with Antiphospholipid syndrome (APS)?
Last year on May 18 I had at least 2 heart attacks, blood clots, rental shutdown and grand mal seizures. I was in a coma for 9 days and it took 75 days for me to get back home to my 5 kids/husband. Am having a hard time dealing with the memory loss and other issues that noone i know really understands as they have not been there. I now have an irregular heart beat, beats to fast tachycardia and APLS. It was finally confirmed this week I do have APLS. There's a good chance i have had it since at least 2000. I have had a few warning signs like livedo reticularis (were my skin looks purple and mottled all the time) had preeclampsia with oldest daughter, or placental insufficiency with youngest, preterm births (last two kids) migraines and of course blood clots( at second child birth). At this time there is no cure and only treatment is blood thinners. I would love to talk to others who have this also.
Thanks!
Amber
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I was diagnosed in 2015 with primary APS, no lupus, falling an ischemic stroke with no family history or pregnancy medical condition. Because of the stroke paired with APS diagnosis I was placed on warfarin from 2015 to 2019. We had a lot of trouble regulating my INR, which meant a lot of visits to the lab for testing and frequent changes of dosing even on a daily basis. I found it very challenging to manage the dietary and even pharmaceutical interactions with warfarin as well. Then in 2019 when it became more widespread for Eliquis to have an antidote and to be more cost affordable, I switched to Eliquis. I also enjoyed the benefit of Elquist being able to be paused Temporarily during my menstrual cycles, as those were becoming so heavy I was severely anemic and required iron infusions. I have been event free since 2015, but after recently being retested to see if my body still aligned with testing done in 2019, my hematologist shared the standard of care for APS now has warfarin as the gold standard and is asking me to change back. This would mean a big change and to be honest I’m not very excited or comfortable with it so I’ve asked her to consult with peers across the country to gain better insight because there are so few studies for this topic and people with APS. Further, my situation is complicated by the fact that I have primary APS, No lupus, and I have been event free since 2015. As always, I welcome feedback and stories from those within the community and certainly excited to hear your thoughts around treatment for those in similar situations.