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Medical Forum / Diseases and Disorders / Arthritis / April 2006orencia
is anyone here on it yet? i know KJ was (it's also called abatacept), but haven't seen her around in a long time. kimmy are you here? do you know how she's doing? i've maxed out on remicade and arava. 10 mg/kg body weight. unreal. this last infusion feels as though it made my RA worse and i've got that old continual hand/wrist, feet/ankle killer pain back. grumble grumble. i'm nervous about what's next. hate being a guinea pig (again). when i got my last infusion, the woman next to me was getting her first of orencia, so i look forward to hearing how she's doing. diane Diane, At www.arthritis.org, on the RA board, there are a few people there participating in Orencia trials. Perhaps you could find some information there?? I'm sorry that you're having a hard time. RA sucks! Char A little birdie told me you were looking for me! I had an infusion yesterday as a matter of fact! I'm still doing well on it after almost ten months, though it seems to be fading just a bit. It doesn't quite last a month anymore. The week before my infusion I really feel it wearing off. My only side effect is a headache. I get it 24-48 hours post infusion and it lasts for about two days. It's not horrible, but it's there. I usually take darvocet for it and it handles it. My study nurse says that about half of us in the study there have the headaches. The infusion itself is a snap. Half hour to run the IV bag, that's it! The study requires me to stay for a half hour afterwards, but I don't think they are doing that normally. Vital signs before and after. Really easy. I have a GREAT nurse who usually gets my IV in first stick (I think she's an angel or something, no one else can do that!) My sed rate stays in the teens so for me anyways, that shows it's working. My white count was a little wonky last time so we're hoping it calmed down this time. Haven't gotten a call yet, so that's a good sign. My study was extended so I am still getting it free. Woooohooooooooo! Til at least July and they are talking about extending it again. Sooo...I say go for it! ANy questions, just holler! I am still alive and if ya email me I'll be over here in a jiffy! ~KJ > is anyone here on it yet? i know KJ was (it's also called abatacept), > but haven't seen her around in a long time. kimmy are you here? do you [quoted text clipped - 10 lines] > > diane kj! so good to see your initials appear on the screen. thank the birdie for me. i can't remember--had you used remicade or enbrel prior to orencia? what are they saying about infections on it? you are so lucky to get it for free. i hope the fade is just temporary. i hate this fading silliness! diane > kj! so good to see your initials appear on the screen. thank the birdie > for me. [quoted text clipped - 6 lines] > > diane Yes,,,, We all should thank the people in the study for having the courage to try something new. I know you read about the people in England trying a new drug that just about killed them. Harv > Yes,,,, We all should thank the people in the study for having the courage > to try something new. I know you read about the people in England trying a > new drug that just about killed them. > Harv Good point, Harv. I'm ashamed of myself for not thinking to thank the folks in the study. My first thought was selfish - wondering if my RD is doing studies for this drug, but then realizing I'd have to drive to Petoskey each time even if he is. I have to be worse than I am to take that on.  SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare I was Enbrel way back when. Did nada for me. ~KJ > i can't remember--had you used remicade or enbrel prior to orencia? > what are they saying about infections on it? > diane Great news on the orencia, KJ! At long last, something with few side effects for you! SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare KJ, good to see you posting. We all have missed you. SignatureHugs, prayers, good thoughts, Warm fuzzies, TLC, and Love Squirrely Jo > A little birdie told me you were looking for me! > [quoted text clipped - 28 lines] > > ~KJ Gosh...we are at the same place in our treatment. I'm on the same dose of remicade (6 week cycle) and also on Arava. After 2 years remicade is no longer doing the trick. We'll be switching to Orencia as soon as possible.I've got nothing to lose at this point. Karen > is anyone here on it yet? i know KJ was (it's also called abatacept), > but haven't seen her around in a long time. kimmy are you here? do you [quoted text clipped - 10 lines] > > diane |
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