I've had APS for over 8 years now. Aside of at least 5 episodes of DVT's / PE's, I've also had a stroke too. I've been at my prescribed INR level of 3.0-4.0 each time they happened. The stroke occurred when I was switched to Xarelto. I wouldn't recommend that to anyone after that happened.
But outside of the chronic blood clots, etc., my worst symptom of the APS is the 24/7 headaches. Sometimes they get so bad I take several Tylenol so I can just go to sleep, sometimes for 12-14 hours at a time. I miss a lot of work due to the headaches, I don't feel like doing the activities I normally do, I find myself in a dark room most of the time, I'm tired all of the time..... all things I've never had a problem with until my APS was diagnosed. I'm only 45yrs old and can't imagine life continuing like this for much longer. The symptoms have progressively gotten worse the last 2-3 years.
I've been to every doctor in my area, three different Neurologists who have prescribed over 13 different headache "preventers" and nothing works. I've even gone to the Mayo Clinic in Minnesota to look for relief. Nothing works.
The latest suggestion from my doctor AND the Mayo Clinic is that I be treated with Rituxan. Studies have shown it can and does reduce/eliminate the cells in your blood causing the APS. Studies have also shown it can and does reduce/eliminate the symptoms caused by APS, aka headaches, high blood pressure, additional blood clots, etc.
But my insurance company continues to reject my Pre-Authorization for Rituxan because they say it's "investigational" even after the Mayo Clinic and my doctor's counterpart at the North Carolina University Hospital all say they use Rituxan all the time to treat APS. OmedaRx is the one who publishes the document that Rituxan is "investigational" that my insurance company won't look past, even after the Mayo Clinic wrote a recommendation letter to my insurance stating my need for Rituxan and provided 30+ pages of supporting documentation that Rituxan works.
I'm at the end of my rope dealing with the symptoms APS has brought me. Has anyone else found relief from using Rituxan or any other treatment?