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Joined: Sep 2001
Posts: 1,432
Silver_AS_Kicker
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OP
Silver_AS_Kicker
Joined: Sep 2001
Posts: 1,432 |
I now know why Cindy used the term "lab rat". Actually, we are just a number not a person. Today was my screening for Enbrel. It was suppose to take only 2 hours!! haha What a laugh. They were soooooo unorganized sort of like a rat running through a maze. It ended up taking 4 hours (missed 5 hours of work) and they still did not do the needed x-rays because the tech was sick. So now I have to go back for the x-rays. After this, they said that it will take 1 week to 10 days to get approved and have the drug delivered to the center. I than will go back every 2 weeks for the first month and than it will spaced out more. Oh my!!!!.......I hope they get faster or else my job will be upset ....and I sure don't want to drop out of the study. They said that it is a double blind study and that I have a 50/50 chance of getting the "real" thing. I would hate to go through all this stuff and end up with the placebo. Betty Edited by betty on 02/08/02 00:32 AM (server time).
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Joined: Nov 2001
Posts: 1,786
Diamond_AS_Kicker
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Diamond_AS_Kicker
Joined: Nov 2001
Posts: 1,786 |
Betty, Good luck with teh rat race.  I hope you get the real thing and it works for you. I also hope that they speed it up next time, hopefully they will have learned from the slowness today what they can do to improve it. Hope everything goes well, Daniel  Keep on keepin on Kicking some AS
Take care my friend,
I hope this finds you well,
Daniel
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Joined: Sep 2001
Posts: 2,609
General_AS_Kicker
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General_AS_Kicker
Joined: Sep 2001
Posts: 2,609 |
Betty, My first visit took four hours. That was squeezed in between the ten hours of driving. And if you didn't get x-rays... I hate to see you have to wait too long before starting the injections.  They can use x-rays already in your medical files. They want a chest x-ray to rule out any lung disease, and one of your SI's to verify that you have AS. My second visit didn't take as long, only about 1 1/2 hours. They took more x-rays, more labs, and another checkup. Then showed us how to do the injections. I go back on the 13th again. Hopefully there won't be any more x-rays. But I'm not counting on it. My neck looked funny on the x-ray, so who knows. I am cautiously optimistic that I got the real thing. The next morning, the stiffness was not as bad. The last few nights I have been sleeping 6-7 hrs. I have not done that forever. I still get stiff, but not after 30 minutes. It takes a couple of hours now. I have a few joints that don't hurt now, but my back is still very painful, and I still can't walk any distance. But I am walking!! My only complaint is coming down with a sinus cold. As for the numbers, I was told that if your number started with a "2", you were a DMARD user, and if it started with a "1", you were a non-DMARD user. Maybe that was just for the clinic I was at, so this may not be any information at all. My fingers are crossed for you. But after 12 weeks, you will be given open label Enbrel, so it is a win-win situation. After thinking about it, maybe lab "rat" is the wrong term to use. Enbrel is made from an extraction from hamster ovaries. So if we start nibbling around and growing hair in weird places..........     Hugs, Cindy 
Hugs,
Cindy
Back pain since early childhood. Dx'd with HLB27 iritis in '96, AS in 2001, FMS in 2002.
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Joined: Sep 2001
Posts: 2,920
Presidential_AS_Kicker
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Presidential_AS_Kicker
Joined: Sep 2001
Posts: 2,920 |
Hi Cindy, I'm delighted to hear you seem to be experiencing some improvement already - hope it continues. Sorry about the sinus problem - hope it's just a co-incidence, not a side-effect.......... So...........you're a "lab hamster" now, huh........??? lol Oh well........I guess they're cuter that rats, anyway........!! Good luck, and (((HUGS))) Sue 
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Joined: Sep 2001
Posts: 2,920
Presidential_AS_Kicker
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Presidential_AS_Kicker
Joined: Sep 2001
Posts: 2,920 |
Great news, Betty!! Sorry about all the delays - hopefully, things will improve in that dept. I'm keeping my fingers crossed that you ARE getting the Enbrel, and that it WILL work for you. Hugs, and good luck! Sue 
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Joined: Nov 2001
Posts: 1,754
Peeping_AS_Kicker
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Peeping_AS_Kicker
Joined: Nov 2001
Posts: 1,754 |
Betty, First of all, good luck. I know Cindy mentioned that even if she was in the control group (receiving the placebo), she would get the drug in the end. Is that the case with your study? ******** Kristin 
******** [purple] Kristin [/purple]
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Joined: Sep 2001
Posts: 1,985
Captain_AS_Kicker
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Captain_AS_Kicker
Joined: Sep 2001
Posts: 1,985 |
Hi Ratty..lol.. Well I can only wish you the best Betty in whatever it is you're taking..lol...hope it works for you! Take care Jackie  
Take care
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Joined: Nov 2001
Posts: 1,075
Iron_AS_Kicker
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Iron_AS_Kicker
Joined: Nov 2001
Posts: 1,075 |
Hi Betty! Hope all goes well for you and that you get the real thing!! Do your symptoms for AS have to be really bad before they consider you for the study? What are the expected outcomes for being on Enbrel? Anyways, for you and Cindy ( hi Cindy ) I pray all goes well! Laura
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Joined: Sep 2001
Posts: 37
Member
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Member
Joined: Sep 2001
Posts: 37 |
Hi Betty
how are ya
hugs
Mark
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Joined: Sep 2001
Posts: 1,432
Silver_AS_Kicker
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OP
Silver_AS_Kicker
Joined: Sep 2001
Posts: 1,432 |
Dear dan in DC,
Thanks......They are getting to know me real well. I'm sure that they have a few names for me by now. They are going to learn that we AS people kickas.!!!!
Betty
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