Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications Enbrel Study "new thread"

Hey Angie,

The way I found out about the study near me was I asked my rheumy if he could put me on Enbrel. He said the insurance wanted extensive documentation that everything else currently available did not work for me. Then the Enbrel rep said that they were back-ordered until June or July. My rheumy left the room and came back a few minutes later and said to call this other rheumy, he was running the AS / Enbrel clinical trial in the county.

Just call your rheumy and ask if he knows of any studies being conducted near you.

Beware, the cut off date for new participants in my study was March 22nd.

Good Luck!

Angela

Hi Angie ,
I had happened to see an ad in a free newsletter called Tidbits here in Spokane county for The physicians clinic of spokane. It said they were currently enrolling studies for Osteoporosis, Rheumatoid Arthritis, Diabetes, Osteoarthritis, Ankylosing Spondylitis and High Cholesterol with high blood pressure. I know it is far away from where you are, but maybe they could lead you in a direction for something closer. There number is (509) 353-4318
Take care

ohhhh if only I could move like this... lol HUGS!!! Pam

Hi Betty,

I completed baseline testing for the clinical trial today. Had the DEXA scan and MRI. Hopefully I will be able to pick up meds later this week.

Angela

That is great. Keep up posted.

I just took my 8th injection. All is going well. I truly forget about how AS feels.

Betty

Angie,
Just saw this while checking out the www.spondylitis.org site. Hope it offers some help.

3/6/2002
A double blind placebo study on the effectiveness of Enbrel in treating patients with ankylosing spondylitis to be carried out at UCLA by Drs. David Yu and Ken Bulpit. Each patient will have a 50% chance of getting Enbrel, and 50% chance of getting placebo. At the end of the study, all participants will have the opportunity to receive one year's free supply of Enbrel. This means that all patients will get one year of free Enbrel regardless of whether their first 24 weeks is placebo or Enbrel. The study will last 24 weeks involving 8 study visits. The Enbrel/placebo, lab tests and doctor visits will be paid by Immunex. Please contact Dr. David Yu at DTYYU@ucla.edu, or the research administrator Tina Burger-Armenta cburger@mednet.ucla.edu (Tel: 310-825-3061).

Take care

ohhhh if only I could move like this... lol HUGS!!! Pam

That is great. Sounds just like the study that I'm in as well as Cindy and Paul.

Several others from KICKAS, in the Dallas area, sent me emails saying they too were going to get involved. However, neither one has written me back lately with there status.

Angie,
Hope can get involved in the study as well.

Betty

I got word back from Dr. Yu and the study has been closed. Just thought you all should know

Thanks for the info kewl.

"Just like moons and like suns, with the certainty of tides. Just like hopes springing high, Still I'll rise." Maya Angelou

Hi Betty,

I heard back from the clinical trial nurse this afternoon. I go to the clinic at noon tomorrow for one last pre-drug therapy blood draw and then I will get several pre-loaded syringes.

I started to flare a few days ago, and the thought of getting the Enbrel is the only thing that keeps me from limping off into the night screaming and pulling my hair out (before it all falls out...lol).

Has anyone heard how the Enbrel works on uveitis/iritis flares. As if all of the pain in my low back, shoulder, both wrists, both knees, and both feet were not enough, my right eye started to act up about a week ago and has gotten progressively worse everyday. I have an appointment to see the ophthalmologist tomorrow afternoon.

I know I am hoping a lot for this drug...but wouldn't it be nice if it cleared up all of it?

I will keep you posted.

Angela

Hi Angela,

That is great. I wish you the best. I have not heard about it helping the eyes. I do know that one of the side effects can be blurred vision. Now that they mentioned that, I have notice my vision going bad. lol It is time for me to get my eyes checked as well.....old age and all. hehe....

I continue to do better everyday. I do not have any AS related problems at this time. If someone told me that I had AS, I would laugh. I FEEL NORMAL. PS....but please do not kick me off of the board if I have fake AS. lol

BTW- I have added my favorite food back to my diet. STARCH...shhhh don't tell. I'm doing this for several reasons. One.....to see how far I can push the body using the Enbrel and not have AS problems. Second....I love the food. So if I feel fine....why not have some FUN!!! I work full time (45 hours); work out 2 hours a day; take care of an 11 year old daughter; maintain a single family house including all house work and the yard; have time to play on the computer with kick AS and dating services; hang out with a date; and look for a new job ......with NO PAIN and NO AS problems.... with less than 5 hours of sleep a night

From the Energizer Bunny....Betty

Betty