What can I expect with Antiphospholipid Syndrome (APS)?

Welcome @lininmd. That must've scared you and your son to suddenly have a stroke. What was your son told about preventing future blood clots?

Until he gets a final diagnosis he is on blood thinners, bp med and statin. He walks every day . It’s been 2 months since the stroke and he has just finished rehab. He is still not back to work

I have also been diagnosed with antiphopholipid syndrome after I had a series of blood clots in small veins -- first on the retinas of both eyes "retinal occlusions" but after a few days they cleared. Then a few years later more serious clots in my inner ear causing hearing loss. first one ear, then six months later, the other ear. They did not clear and I have only 20% hearing . A course of steroids was prescribed that might be possibly bring back some hearing. They did not. There is no other known cure. The only treatment is to prevent further blood clots or a more serious stroke like your sons. So I am on blood thinners for life, and have had no further incidents. I am 73 years old and for my age, in very good health and exercise regularly. with my hearing loss I still ride my bicycle almost every day and swim in the summer. Apart from bleeding easily I have been able to tolerate eliquis/apaxiban. My doctor wanted me to take wafarin because it tested as more effective for antiphoso lipid but I refused because of the dietary requirements and restrictions. I travel regularly with my husband - we are in India for three and half months right now. So the disease has not impacted my life beyond the critical hearing difficulties. I wish your son no further incidents.

Welcome! You found a good place. Doc is on target!Anticoagulets needed. Read previous posts and NIH info.

My hematologist prescribed Eloquis to me for long plane or car rides over 2 hours in length. I have not taken them yet, but recently noticed the fine print during an Eloquis commercial that warns of use by APS patients. This has caused me to distrust my Doctor’s knowledge of APS. Is anyone else confused by this warning on the medication?

I think my son is on Eloquis. He needs to ask his doc, thank you

@beesmom This study by the National Institutes of Health shows that Eloquis is used with APS. But it also says that Eloquis can be a problem. So, I would guess the best solution would be to do your research and then to have a good discussion with your doctor.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9125051/

¿ Alguien de este grupo tiene síndrome antifosfolipido? A mi me lo diagnosticaron hace 10 años.

Translation:
Does anyone in this group have antiphospholipid syndrome? I was diagnosed 10 years ago.

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Bienvenidos, @encarni. I moved your message to this existing discussion:
– What can I expect with Antiphospholipid Syndrome (APS)? https://connect.mayoclinic.org/discussion/aps/

I did this so you can read previous helpful posts and connect easily with other members who have experience with antiphospholipid syndrome (APS) like @sunshine71 @nicholas94 @cornwalluk @nicholas94 @paktoledo @lininmd @hopeful2023 @wig @uytna @shani @beesmom and others.

Having lived with antiphospholipid syndrome for over 10 years, I'm sure you have much experience to offer members. What symptom do you find the most challenging?

Muchísimas gracias por ayudarme. Yo actualmente tomo anticoagulantes, mi problema es que me da frecuentemente isquemia transitoria,y tengo un micro ictus. Aunque no hay ninguna secuela. Suelo padecer dolores frecuentes en espalda y el cansancio suele acompañar. Pero la actitud, el autocuidado, descansar lo suficiente y amarse mucho a una misma, es la clave para llevar esta enfermedad bien. Y sobre todo moverse, hacer yoga, caminar, nadar. Y RESPIRAR LA VIDA. Me gustaría saber qué efectos tienen ustedes con el síndrome antifosfolipido el mío es primario. Gracias y ánimo para seguir adelante

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