Anyone have experience with Antiphospholipid syndrome (APS)?

I didn't mention, but a few years before I lost my hearing, I had retinal occlusions/clots in both my eyes but they cleared within a week or so. No problem since. The doctor says this is because I'm on blood thinners.

Wondering how many have been newly diagnosed with anti phospholipid antibody syndrome since receiving the Covid vaccine?

My APS was diagnosed after I had a CRVO in my right eye. This occurred two weeks after I had Covid and 4 weeks after I had the 2nd booster in 2022. After what I have learned from multiple doctors, the vaccine or Covid didn't cause APS, but it most likely was the trigger to cause my first clotting event.

I have also been told by my Mayo doctor not to take any more MRNA vaccines due to their increased clotting risks.

I don't understand all the vaccine back and forth? My Drs told me to get the vaccines bc of my clotting factors (occluded MCA and ulnar artery) years before COVID.

I was diagnosed with APS right after Covid. I was told that in my particular case, the clotting mechanism related to immune globulin mu and cardiolipin mu while Covid clotting relates to immune globulin alpha. It might be worth getting the details of the test results. There at least 3 different sets of potential clotting issues and some are more benign than others. Also results can vary over time.

The odd thing about this, in my view, is that since no one had tested me in recent times for APS or lupus, I might have had APS without knowing it for years.

No MD has ever suggested avoiding the Covid vaccines. I have had several Covid shots since the diagnosis with no response other than the usual fatigue and aching arm.

I had the Covid vaccine and a booster. I just had my second Antiphospholipid antibody test after 12 weeks and the numbers just keep getting worse. I have not had any clots that I know of. I do have headaches every day, constant joint and muscle pain, the lacy rash, and muscle uncontrollable movements that cause my arms, legs, body and head to jerk.As far as I know there is no connection to the Covid vaccine. My hematologist has not mentioned it either. I have been on low dose aspirin since the initial positive test. Go back to the Dr. Tuesday to see what’s the next step. Anybody else had this without experiencing clots. What did they do for you?

My daughter’s hematologist said it’s a crap shoot. Both the vaccine and COVID can increase the chances of clotting. She got the vaccine as required by her job and increased her dosage of aspirin for 3 months. It is a decision that needs to be made between you and your doctor.

I know this for sure. I will not get another Covid shot! I often wondered what the negative consequences of the Covid vaccine might be. Is it possible that there’s a connection even 5 years later. Scary to even contemplate this! The vaccine was said to be effective (I think) for 6 months.

So, I don’t have Antiphospholipid antibody syndrome, just the antibodies. Prescribed Low dose aspirin daily. No idea why I have really bad all over muscle pain. I’m just trying to keep myself from going crazy! This”acknowledgment of pain” but no diagnosis is of no consequence ! Pain medicine virtually ineffective. So far the only thing I know is that they don’t know!

Hi @rubonimo, I’m new here and just saw your recent post regarding Antiphospholipid Antibody Syndrome. I am waiting for my test results, but currently take LYRICA and find it very helpful for nerve and muscle pain. I have noticed that 75 mg every 6 hours works best for me. What medicines have you tried?
Amy