What can I expect with Antiphospholipid Syndrome (APS)?

Ive been on hydroxychloroquine for 15 years, and I have had no side effects that I’m aware of. I was diagnosed with APS and was told that Plaquenel is a Lupus drug, and that this antibody is a Lupus antibody.

No I'm not taking blood thinners. Is it nessasery to take one ?

Yes it is if you have APS. I’ve been on a blood thinner since my doctor (oncologist) diagnosed me with APS. Was told by the oncologist I’ll be on at the rest of my life !

You will tired and exhausted not only from APS but also from the medications! There is not a lot of help regarding APS ! Listen to your doctor and ask about finding a support group! It is a very scary disease! Plus you need to be on a blood thinner !

Are you not on a blood thinner ?

Good comment. Until I can get in to see a hematologist, I am taking a full aspirin every day. The waiting is not making me feel comfortable with our current medical system here in the valley. I have been experimenting with my treatment for heart conditions under the guidance of a cardiologist and rheumatologist as well as talking to my new primary care physician. With a history of TIA, Stroke and having had an ablation procedure done this new diagnosis is disturbing. I plan to seek out a dietician to discuss my keto diet and plan a path forward for eating healthy. I need to get back into an exercise routine too. I'm preparing to retire in 3 years and need to explore the difference in medical coverage that will be available when I take that leap. Take care and thanks for commenting.

I have been on hydroxy. For years now, and it was prescribed for APS. It worked immediately! (The red, painful lumps under my skin were gone overnight.) I did see a hematologist to make sure this medication is safe to take, she did her own bloodwork, and agreed 100% that this medication is right for me. I do have many symptoms of lupus w/o positive tests, and I now have PMR. I’m working thru pain and meds, and we’ll see what happens.

I too developed Antiphospholipid syndrome after COVID & mRNA shot. I had both PE and DVT due to the lupus anticoagulant antibody. I have been on blood thinners ever since my event (fall 2021). After my hospital stay to treat the PE and DVT, I started with Eliquis, then had to go to Enoxaparin shots when Eliquis did not work, then transitioned to Xarelto (terrible side effects for me), and finally settled on Pradaxa, which I have been on for 1.5 years. Over the past year though, I have experienced debilitating joint pain, muscle weakness, brain fog, headaches, etc, and was just diagnosed with Sjogren's syndrome as well. I feel like I am living in a completely different body from 2 years ago, as I had no medical history prior, was extremely active, and my life seemed to change overnight. I have had to become a constant advocate for myself, and went from having the normal primary care providers to a slew of doctors I see regularly (hematologist, vascular specialist, rheumatologist). I feel your pain and so happy to find a forum with others dealing with these syndromes. It is exhausting and defeating.

I was diagnosed with APS a year ago after a heart valve replacement and am on Xarelto. I see a hematologist, but I'm wondering if I should see a rheumatologist? I don't feel like I'm being totally listened to when I describe symptoms I'm having: eye problems, brain fog, joint pain and some days, exhaustion. I just want to be heard by the doctors I see, suggestions?

D.E.S.???? Was anyone with APS born to a mother who took D.E.S. during their pregnancy? My mother did which has caused me to question where I got this mysterious autoimmune disorder that no doctor has been able to tell me how I got it. Has anyone else been able to get a definitive answer as to how they developed APS?