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

Angela,

That is great news that you are near one of the studies.
Sorry to hear that you have to go through pain to get into the study. It will be worth it. Whatever dosage of meds you are on 2 weeks prior to the study are the ones that you have to stay on throughpout the study.

I wish you the best.

Betty

Edited by Betty on 03/10/02 10:42 AM (server time).

Paul...that is fantastic.

Seems that we are all getting the "real" thing. Hope you do too. Let me know the details after Monday.

I would like to know how long your study will take. Cindy said something about three months. Mine will not be over until Sept 12. (approx 8 appointments) My next visit is on 3/14. I have received 4 shots so far......I feel great.

I also heard a rumor that everyone is getting the "real" thing in the study and that it is only dosage amounts that they are altering. This is because the drug has been approved (I think) and they are looking for the results of different dosages. Who knows......guess we will when the study is over.

Keep us posted.

Betty

Hi Betty,

I spoke with the clinical trial nurse yesterday. On Monday the 18th I go in for my initial screening, blood work, and independent exams by two docs. One is in charge of the Enbrel, the other is in charge of the blind control group. Then the following Monday the 25th I go in for DEXA Scan and MRI. The cut off date for this study is March 22nd. So if I make it through the initial screening I am in.

Oh please pray I am accepted into the study. The pain has been getting worse the past couple of days and I still have to taper another 5mg of prednisone before the inital screening.

I will keep you posted.

Angela

P.S. Reading how well you have been doing has been giving me the strength to tolerate the pain.

Angela..

That is great...and thanks for the nice words. I am glad that I have given you encouragement.

Everybody reacts differently. I responded the first day and it gets better everyday. I have to force myself to remember the Vioxx. I have NO pain and NO stiffness.
I have been able to increase my exercise time at the gym. Just before this study, my pain had increased. I had gone from 25 to 50 mg of Vioxx. Now it is hard to remember to take it.



Betty

Hope you get in, it's been a miracle for me.

Hugs,

Cindy

Good luck, I hope you get the real thing.

Hugs,

Cindy

Betty,

I'm glad to hear that you're doing great!! I have been up till now, but it seems I've hit a plateau. It's been 7 weeks for me. I'm still a little bit stiff in the mornings, and the weather really affects me. But I did Walmart yesterday, without my wheelchair. I'm still having a lot of low back pain and some joint pain, but I can walk now, so I have to say that it's been an improvement. I'm assuming that my pain is caused by mechanical damage. Enbrel won't cure AS, only stop it in its tracks. I'm still having problems with short term memory and spelling. I know this may sound stupid, but it was a good trade. Now I have an excuse to be this way. I may not know much, but I feel good.

Hugs,

Cindy

Hope things get better for you Cindy. It does sound some improvement. I'm sure you are right about the mechanical stuff.

So you have noticed a change with the short term memory. Did this start just after you started taking the Enbrel?

Me??? I always felt that I had a short term memory problem....but yes, it may be worse because I'm feeling so good that I try to do too much. Thus overload and memory problems.

Several hours after taking the Enbrel, do you feel like the body is several degrees hoter. It is either the Enbrel or I'm having a hot flash!!

Betty

Betty,

I get a warm feeling, too. I thought it was just middle-age. Maybe it's because the shot is so cold going in. It's like I'm hot in some places, but cold in other places all at the same time. Maybe I'm not making much sense here. I've been told my memory thing is a middle-age thing, too. But I am doing a lot more now, so maybe it is just from overload. I noticed that after about 3 weeks.

Hugs,

Cindy