Hello to you all , I need to ask those of you who have been prescribed cyclosporine ( for me its under the name neoral 100) , how long have you been on it and what was your dose? And have you gone into a remission plan to suspend using it after the symptoms (hives and swelling) have stopped? Thanks
Rebekah Dunker-Dilks I have been on cyclosporine for almost 6 months now. I started at 200 mg (2x50mg in the morning and 2x50mg in the evening). I have been slowly weaning myself off everything else and am now successfully taking one zantac (randitine) a day. No more antihistamines at all!! I have also decreased the cyclosporine to 100mg daily (2x50mg at night).
Before, I was taking tons of everything and Xolair (omalizumab) when I switched. I am 99% hive and swelling free 99% of the time. It’s been such a drastic change for me. I sometimes get phantom hives, I don’t believe I am in remission yet, but it’s finally controlled. It’s scary to start taking it and they must watch you closely by monitoring your blood work. I do get sick a little easier, I would say I suffer from some fatigue; but I would take this any day of the week versus what life used to be like.
Fatema Al-Zahraa Thanks a lot for your feedback. I am on dose 200 daily for four months now and trying to wean myself off cortisone and antihistamines as much as I could . I was only wondering for how long would.it be safe to stay on the cyclosperine if the blood work stays on the safe margins. Stay healthy
Rebekah Dunker-Dilks Fatema Al-Zahraa My doctor says it takes different people different amounts of time to go into remission. He also said as long as the blood work is good, it’s okay to stay on it. I wish you all the best!!
Sue Bellamy Taking it for almost 9 years apart from a break to try xolair (not effective). Very small dose of 100mg alternate days and sometimes every 3rd day, plus fexofenadine and cetirizine. Regular checks with the dermatologist plus blood tests. Works for me , and it started to work within 24hrs
Joyce Rosenblatt I took cyclosporine for my first flare 18 yrs ago. I took neoral and went into remission in 6 months. My second flare I was much worse until I could get into a dermatologist. I begged for cyclosporine. It helped until I got a bad bronchitis and ended up in the hospital with metabolic acidosis. I was really screwed up. They decided I was developing kidney issues from the drugs. So on to a miserable round of drs until I got in to a immunologist who was doing research. Tacrolimous worked great until I finally got Xolair. Antihistamines never really helped. I’m somewhat controlled now and on a very low dose of tacrolimous. Good luck.
Fatema Al-Zahraa Thanks Joyce, stay safe and sound 🙂