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What can I expect with Antiphospholipid Syndrome (APS)?
Autoimmune Diseases | Last Active: May 16 11:41am | Replies (188)Comment receiving replies
Hi. My name is Katie. I've been diagnosed with APS for years. I've had DVT and PE multiple times following a surgery of some sort but just this past weekend out of the blue I developed a PE. I'm devastated. I had previously been on coumadin for years but recently switched to Xeralto bc I'd gone so long without any issues that we felt I was stable and I wanted less weekly or biweekly blood work. Now I'm back on lovenox and coumadin and I'm a basket case. I Don't understand how a random clot forms like this. Please anyone talk me off this ledge. I'm terrified.
Replies to "Hi. My name is Katie. I've been diagnosed with APS for years. I've had DVT and..."
@kittyk1178 I really understand your being terrified because your blood clotting has changed. But it’s better to be cautious so you can safely monitor yourself. Set up a list of things you will do every day to cut the incidence of clots forming. Many of those things are in the article I included here:
https://www.webmd.com/dvt/blood-clots
Some things not mentioned but helpful are: don’t cross your legs (this puts the weight of one leg onto the other), have your feet/legs on a footstool when reading or watching TV, don’t have tight elastic on your stockings or cuffs of shirts, get up and walk during commercials . . . . .
My husband was recently diagnosed with MPS, another blood clotting disorder. I’ve told him the same things I told you. If I know he hasn’t had a good walk, i make him get up and we go walking. And I remind him frequently to drink water. I, too, have an autoimmune disease, so I make lists that keep me on track.
I also included some pictures of how clots form. Lovenox and coumadin are the 1st line drugs for blood clots but they require weekly blood work and the other, newer drugs are much easier to use.
You’ve had APS for years and this weekend a PE developed out of the blue. If this was your first PE, then you’re already doing a good job monitoring and taking care of yourself. Now, you can just addd a few more tricks to your medical bag. Calm down and know that you’re doing everything you should and taking great care of yourself.
What do you think you could do to help yourself right now?
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@kittyk1178
Do you also take aspirin? I am waiting to get diagnosed with APS because I have had multiple blood tests showing the cardio lipid autoantibodies. My understanding is your immune system attacks tissues and forms blood clots. You need to be careful not to fall or bruise yourself so your body doesn’t make blood clots. Have you had a recent injury, cut or fall that may have created a clot that went to your lungs?