I don't remember if I told u that Dr. EKRAM said he may put me on Plaquinil! My sister also, after researching, also suggested Plaquinil! How r you doing Kerstin! I appreciate all you and Mary and the beautiful Lady with the sunglasses, also an Administrator for helping me beyond and above the call of duty! If ever anyone here in USA needs me I will do my utmost to pay it forward to anyone I can! Luisa directed me to Hospital for special surgery in NYC & I went this past Wednesday! My appt time was 11AM & I arrived at 10:45! I didn't even get a chance to take my coat off wen he called me in! He told me. All you people in England help him and he had a conference today with Hughes Syndrome foundation! He teaches at Cornell University and helps us to research this COMPLICATED DISEASE, as he calls it! He told me I was also very complicated, but I'm use to that cuz I've had this disease all my life! I'm 62 now and finally got an ANSWER I've been waiting for my whole life after being treated DASTARDLY BY MEDICAL PROFESSIONALS!!! THANK YOU HUGHES SYNDROME FORUM!!! GODSPEED TO YOU ALL! Please keep in touch as I still need ur support! My INR level on increased coomadin was only 1.7 this past Wednesday!