Anti-phospholipid Syndrome

@theal This is your first post so welcome to Mayo Clinic Connect! I’m so glad you found this site to get answers to your questions.
You may want to check out these 2 discussions on APS. There is lots of good information. And other members will give you some answers based on their experiences.
https://connect.mayoclinic.org/discussion/antiphospholipid-syndrome-hughes/
https://connect.mayoclinic.org/discussion/aps/
When did you first have blood clots? (You mentioned ‘no new blood clots). Are you followed closely by your doctor?

My ER visit in Sept 2022 showed blood clots in my lungs and legs. A few days later a hematologist told me that I have APS. After a month or so on Coumadin, my INR numbers normalized. Since then all the dr does is comment on follow-up bloodwork, every 3 months or so. I know enough to manage my vitamin K foods and I wear compression stockings, but aside from that I have not been provided any additional procedures or advice to manage APS.

@theal This information from the Mayo Clinic explains everything you want to know about APS. It even has a section on self-care and what foods and supplements to avoid while you’re on Coumadin (warfarin).
https://www.mayoclinic.org/diseases-conditions/antiphospholipid-syndrome/symptoms-causes/syc-20355831
Unfortunately in health care today, everyone has to be an advocate for their own care. That means knowing as much as you can about your disease, being prepared with good questions when you see the doctor. It’s not easy, but it is do-able.
You can start by keeping a journal of anything new or different with your health and making a list of questions you want answers to. Think you can do that?

Thank you for your response and suggestions. I think I'm pretty clear about necessary diet and self-care directives, but I will review with my hematologist during my next visit. I get the impression, though, that as long as my INR is good, there is nothing more I can do to be proactive and avoid big problems. Is this true?

I'll start a journal, per your suggestion. I have noticed that I need to rest more often than I want to, or needed to, in the past. Is this an APS issue or a just-getting-older issue?

Finally, I was told to wear compression stockings which I have been doing since I was diagnosed with blood clots in my legs and APS. Are compression stockings necessary?

Thank you!
Thank you.