Hi, Betty,

The number started out at 200 for the original study. I ended up being number 201. But the last forms we signed mentioned how many patients. I'm thinking it was either 277 or 266.

I'm hoping to ask the doctor about my long-term treatment options tomorrow. It's scary, really. I hate to be plunked back into where I was before Enbrel. Now that I know Enbrel works, it's going to be hard to convince that I'm better off without it. Living dead was what I was.

He wants me to show up without taking any pain meds just to see how I am really doing. (Currently Vicoden 750) Even I'm surprised at how much pain I'm in. So I guess the Tylenol I took once in a while way back when did help. I haven't sleep for longer than two hours at a time and I can barely shuffle around the house. I haven't been anywhere since church on Sunday. I don't know how much more I can take. I have ten hours of travel ahead of me for tomorrow. Hopefully I'll look like something the cat dragged in (I know I feel that way), and they'll have mercy on me and start some good pain meds. It's funny how something so simple as a little pain control can improve your life.

I have a new insurance, and it doesn't look like the arthritis clinic is going to accept it. They said it can't cross state lines, but I KNOW better. I called and asked the insurance. Cleveland Clinic accepts it and Cleveland is a long way from a West Virginia border. I told the clinic over the phone I'd stop in and talk to them Thursday. They'll have to look me straight in the eye and tell me it's too much bother to fill out the forms for just one patient. Hopefully I can talk to a big cheese in that dept. I know I'm only one patient, but I really, really want to keep going here. I'll probably make a fool out of myself, but I'm desperate. In order to stay on Enbrel, I have to have a doctor willing to fight for it. I think my odds of having that will be greatly diminished if I have to start doctor shopping again. Cross your fingers for me.

Hugs,

Cindy

I am only one; but still I am one.
I cannot do everything.
But still I can do something;
I will not refuse to do the something I can do.
Helen Keller

Hugs,

Cindy

Back pain since early childhood. Dx'd with HLB27 iritis in '96, AS in 2001, FMS in 2002.