Hello good people
I thought I would post today, instead of lurking as I usually do. I have sero negative APS, but have had trouble with doctors believing in the diagnosis. Meanwhile, in the almost 3 years since I had Pulmonary embolisms, I have collected a myriad of symptoms and diagnoses. I have been on Xarelto since early 2015 with no improvement, only more and more manifestation of the APS.
I went to my pc Dr. about 5 weeks ago out of sheer desperation - I hardly left the house as I could not walk or stand for more than 5 minutes at a time. I was in constant pain, even being woken at night with it and was having 2 - 3 migraines EVERY week. He completely surprised my hubby and I by suggesting a two week trial of comaudin.
I had an instant improvement with the migraines, I had one about a week after starting warfarin and NONE since that one! Why didn't someone tell me about that 35 years ago. I have had chronic migraine all my adult life. My doctor said he would aim for an INR of about 2.5. I said "3.5". I keep pushing him and he now agrees to an INR of 3.5, I was at 2.9 at my blood test last week.
My migraines are gone, a lot of fatigue has gone, brain fog is not as bad, but the joint pains are still horrendous. I have developed RA in both hips and both knees. My dr now really believes in my APS status and is very encouraged by my improvement and will keep me on the comaudin.
At last, I see some light at the end of the tunnel.
Keep well everyone.