Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group approved for Enbrel study

Congratulations, Betty!! That's wonderful news! Do hope all goes well for you. Please keep us posted.

Good luck, and
(((HUGS)))
Sue

Way to go Betty I hope it works.

What is it Enbrel. Is it meds or what?

I sure hope it makes you feel better.

Donna

Hey Paul,

Wow that was great timing for a doctors appointment.

Lucky dog.

Donna

Sitting in the waiting room/doctor's office for hours is the absolute WORST! I have a retinal specialist.. (Sign on office door "Due to the nature of our specialty, your appointment could take several hours".) I used to see him EVERY WEEK. I would sit there for 2-3 hours each time, alone (because none of my friends/family are going to come sit with me for that long!), AS hurting, so bored... Now I see him every 6 weeks, woohoo! I HATE waiting!! I feel for you, Betty... Hope your next appointment is more speedy!

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Kristin

TODAY IS NOT A DRESS REHEARSAL!!

Wow...My rheumy is that way. I have been seeing him for almost 4 years (once every 3 months) and he is never late.

Soooooooo, knowing this.....I thought that the study would be the same since the same docs are running the study. Wrong!!

This young PA was unorganized. Carried huge amounts of paper from room to room including the protocols for the Enbrel study. It was a big, big, giant book. He made sure that I saw it. He had me complete a large survey and than he turned around and asked me the same questions using another large packet.

I waited 1 hour to get called back, 2 hours to get the info from me, than he ran down the hall at 12 noon to get the lady that did the joint count. Than at 12:30 he went to get the doc. He was at lunch by that time. He stopped his lunch to see me. I left at 1:00.

I asked why I could not see the doc before 12:30? He said that everything had to be done in a certain order. If he scored my survey.....and it did not indicate a certain thing, the study would end and the doc would not be called.. Said this was protocol.

Anyhow, he also sent me down at x-ray....30 minutes later a lady told me that the x-ray lady was out. They went to get the PA. He said that he had forgotten. (Wasted more time)

I called my doc on Tuesday to complain about the PA. The nurse said that they had heard the same thing. 2 hours later....I get a call that the meds are in and that I can come in at 8:30 2 days later (Thursday).

The PA said that when they call the info into Enbrel it takes about 5 days to get the meds. He than calls me AFTER they are delivered. I asked why not schecule the appointment 5 days out when you call Enbrel to save time. Answer...Protocol!!


I will keep you posted.




Betty

Kristin,

Yes you are right...It would just seen to be my luck with how things are going.

Betty

Well, no matter what your condition, I hope you get some much-needed relief. It sounds as if that unorganized PA should provide you with Enbrel in exchange for putting up with him! Grr!!

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Kristin

TODAY IS NOT A DRESS REHEARSAL!!

HI Paul,

Got my first injection today..

Appointment was for 8:30...I got there at 8:00.

I was the first person but had to wait until 9:00 to get called back. Apparently, they have a Thursday morning meeting and tthat seems to run late.....so all the patients build up in the waiting room. lol

Saw the lady that does joint counts at 9:05
I saw the doc at 9:15
Did the survey at 9:30.
Blood at 9:45
X-rays from 10:00 - 10:15

Wow seemed as if things were going to be ok after all!!!! Wrong!

The PA said that he would have the meds ready by the time the x-rays were done.
Haha ...now why would I bellieve him?
Sure enough, at 11:00 I had to stand in the hallway to flag someone down. Some nice nurse followed up with the PA and made sure that things got moving.
Medication delivered at 11:15
Left at 11:30.

So it still turned out to be a 3 hour appointment.
8:30 - 11:30.

Almost all of the other patients were gone. They claimed that it takes a long time for the "blind" pharmacy to make the med. lol
Maybe that means I got the real thing?

I go back in 2 weeks, than 2 weeks after that......







Betty

Edited by Betty on 02/28/02 06:18 PM (server time).