What is the life expectancy for Antiphospholipd Syndrome?

A fellow caregiver asked...

I am 48 and 20 years ago,I had a major stroke, which I later found was due to antiphospholipid syndrome, a fairly new concept at the time. I am female, and my paternal grandmother and her family all have rheumatoid arthritis.
I'm on a regimen of coumadin 5 mg to keep me at about 2.3 INR. I am checked every month. Unfortunately, for the past 10 years I've noticed, after the fact, that I've been having TIA's more and more often, the last one happening on a Tuesday 3 weeks ago. This latest one left me not remembering most of that week. I asked my doctor who 1st diagnosed me how long I was to live and he said about 15 years. That was in 1998. He said it was like Lupus, it got to different organ systems until it got to one. Was he right? How does APS work? I know it's an autoimmune disease as is RA, but how deadly is it?

Expert Answer

James Castle, M.D. is a neurologist at NorthShore University HealthSystem (affiliated with The University of Chicago) and an expert on strokes.

First off, you need to get yourself to see a Stroke Specialist, Hematologist, and Rheumatologist IMMEDIATELY. Anti-phospholipid antibody syndrome is not like terminal cancer, where you would expect some time limit on your life span. You should also not accept recurrent strokes as inevitable. Anti-phospholipid antibody syndrome is a treatable, auto-immune disease, wherein your body is attacking the clotting proteins in such a way that your blood system is prone to clotting. It is typically treated with Coumadin (very frequently at levels higher than an INR of 2.3) and with immune suppressants to help the auto-immune attack.

THIS IS A TREATABLE CONDITION, NOT A LIFE SENTENCE. GET YOURSELF TO A REGIONAL HOSPITAL (ONE ASSOCIATED WITH A UNIVERSITY) AND GET TREATED BY SPECIALISTS AS SOON AS POSSIBLE.