What can I expect with Antiphospholipid Syndrome (APS)?

Have you been taking warfarin? If so, how has it been. I’m scared to death if this drug.

Yes, I have been taking warfarin since 2017. I still get iffy about it too. But, I have regular checks for my "INR" levels frequently. Mayo does use INR levels to check to see how fast/slow my blood is clotting. My INR level goal range is between 2 to 3. If anytime it's under 2, or above 3, they adjust my Warfarin Dosage to keep me in my goal range. Then, they recheck the level to make sure it is back in range.
This is NOT a blood draw each time. But, finger stick. So, don't be afraid of getting your blood work done.
Hope this helps! Pat

Thanks. Not afraid of sticks. I am sensitive to meds and worried about my erratic eating habits, especially with this medication.

You have to limit the amount of foods high in vitamin k. Vitamin k causes your blood to clot.
Examples of foods high in vitamin k are green leafy vegetables blue/blackberries. Your nurses should be able to give you list of foods high in vit.k. You could reach out to a REGISTERED dietitian.
Or, Google the information. Reach out again if this helps! Pat

Basically, you have to watch out for foods high in vitamin k. Vitamin k causes your blood to clot. Examples include: green leafy veggies(broccoli, cabbage, and spinach), for instance. Some fruits are high in vitamin k, such as blue/blackberries to name a couple. The nurses in the Anticoagulation Dept. can fill you in on more foods to cut down on. You don't have to not ever eat them again, just use in moderation.

You could also see a REGISTERED DIETITIAN for help with your diet.
Certain meds and over the counter meds contain vit k. In no time, you will be a pro at this!
Feel free to ask me other questions. I am a retired health care professional. I don't have all the answers but, maybe I can direct you in the right way. Pat

I have been living with Anti Phospholipid Syndrome for most of my life. I’m 55 yrs old now and I can’t remember not having it.
Anyone else like me?

Welcome @kimbersue, I look forward to getting to know more about your story living with antiphospholipid syndrome (APS) for such a long time. To help you connect with other APS members like @sunshine71 @skymya @wittycjt @elizabeth513 @nicholas94 @lee7766 @huffman @elaine1809 @brendamorales1, I moved your post to this active discussion:

- What can I expect with Antiphospholipid Syndrome (APS)? https://connect.mayoclinic.org/discussion/aps/

As you read through some of the previous posts, I'm confident that you'll have experiences to share and nuggets of wisdom.

Kim, are you on treatment now? How are your symptoms managed?

I was diagnosed with APS after I developed blood clots in small veins- first in my eyes - retinal occlusions. Blood thinners were recommended but I chose to just do baby aspirin. Then a few years later, I experience Sudden Sensorial Hearing Loss in one ear, and six months later the second ear. Both happened overnight and nothing brought the hearing back. I have at best 30% hearing in both ears. I'm now diligent about taking blood thinners and have not had further blood lots to my knowledge. I'd be interested if anyone has a similar story. So far, I've only heard of sudden hearing loss in one ear and not coupled with APS. Otherwise, I have no symptoms. I'm an otherwise a healthy and active 73 year old and grateful for it.

I have been on low dose aspirin for many years. Had a stroke in January 2023 and prescribed Lipitor and Plavix. Now Dr wants me to take Warfarin instead of Plavix. Any thoughts