What is the life expectancy for Antiphospholipd Syndrome?

5 answers | Last updated: Aug 21, 2017
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 Answers

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.


Community Answers

Candicelarsen answered...

My husband has the same thing. He was also getting TIA's all the time. Forgot a whole week. Curtain Vision. In the ER all the time. He is now on rituxan (rituximab) treatments. Night and Day difference. Saved his life! But had to fight the insurance company. Very common treatment for arteritis but not for APS. Hope this helps.

Alg answered...

I'm 54 and was diagnosed with APS in my late 20'sI suffered a superia vena cava blockage I have until now lead a normal life and the APS is controlled by Warfarin however, recently I have also been diagnosed with Atrial Flutter which again is a treatable condition which has been brought on by the APS. My consultant recommended an ablation to rectify the condition but during the procedure the surgeon was unable to do the ablation as the veins in my groin on both sides are blocked. There doesn't appear to be any other way to the heart and I will need to take medication to slow the heart beat. I'm so disappointed as I had hoped my condition would get better. Has anyone else experienced similar and can maybe give me some positives for the future. Would like to hear from other suffers or medical staff with more knowledge of APS. I would be happy to share experiences with others if it can help them.

Wittycjt answered...

Why can't they go through an arm are they clotted also... I wouldn't think so? Your blood has to be circulating some way?

Tduvall68 answered...

Hello everyone. My name is Terri ,49 years old living in Fort Collins, Colorado and with lupus and other things. In 2010 I had the gastric bypass and lost over 250 pounds. Now ,y daughter is 22 years old and also has lupus but after many years of something else, she was recently diagnose with Antiphospholipid Syndrome. This is so rare I only heard about once in medical school. She has a history of throwing clots in her lungs and after many tests and awesome doctors that we both have, she was positive for this rare disease. Now my Hematologist is going to test me to see if I carry the gene. Is there a good chance I could be a carrier and not show any signs like my daughter?