Hi lovely Simone,
You are such a darling. I think of you so often and I hope and pray for you to feel better. I hope to God I don't develop those antibodies, but it is all so dicey isn't it. i am soooooo happy to hear the pred worked for your holidays and I hope it will kick in again. I wanted to mention a couple of things. Some of the terrible terrible pain you might be experiencing might be those same anti-bodies. When Remicade stopped working for my girl-friend, she said that she experienced triple her usual pain for quite a long time until the Rem. was totally out of her system. She then went on Enbril and it worked really well for her, where as the Rem. only worked for a month or so. We also notice that when people go into continuous high flares, it is harder and harder to bring them down..so we try to bring down flares as fast as possible. I wonder if some of this is happening with you. Would you consider trying Enbril? Anyway, thanks for all your kind thoughts. Oh yes..just wondering..did you notice weight gain on the Rem.? My girl-friend and I both put on a ton of weight. I thought it was the pred...which I'm sure it was in part, but now I'm realizing that the Rem. is a real contributer to this as well. It's all pretty awful but I am working on it. I hope you get some answers from your Rheumy.
Liz