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

Becky,

The best thing to do is search on the Internet for trial studies or to ask your doctor.
Also, if there is a medical school nearby, they can get you in touch with a local study.

Betty (The Energizer Bunny)

Hopefully Enbrel will soon be approved for AS. There is a long waiting list for Enbrel, but it is worth waiting for.

MTX dropped my blood count in half after only 3 weeks. I stopped MTX, and it has slowly gone back to normal.

If your insurance balks at paying for treatment, would your doctor consider changing your diagnosis?? It doesn't have to be called AS, it could be sero-negative arthritis, unspecified arthritis, or anything that will let you get proper treatment. When you get down to basics, arthritis is arthritis.

Hugs,

Cindy

Cindy, hope you are doing well.

I had my final visit for the first phase of the study today. It lasted about 3 hours. There was a lot of paperwork.
They administered all the test but no x-rays. That surprised me.

One thing of interest...all of the other questionaires throughout the study period asked about physical symptoms. This time, there were questions about feelings, depression, energy, etc. They wanted to know ONLY about the last 4 weeks. My symptons of depression, sadness, etc. was a few months back during the adjustment period on the meds. This did not count.
Cindy, did they ask you the same things?

BTW- It also asked about memory.

Maybe all those things were for real and not just in our head. They must be catching on.

Betty (The Energizer Bunny)

All the same things!! And a census form, too. I just had my "first" follow-up visit for the new study. Only 2 pages to fill out. Sorry I haven't been around much lately. I have been quite busy, and not feeling well, either.

Hugs,

Cindy

Sorry to hear that you are not feeling well.

Hang in.....

Betty

Betty (The Energizer Bunny)

New side effect of Enbrel: Forgetfulness. I have to remind myself sometimes that I still have AS!! Enbrel may not be a cure, but it comes pretty close.

I just had my Enbrel checkup last week. All is well. I still have inflamation in every joint, but it is nothing like what I had a year ago. I have not used my wheelchair since February and it is now covered with a thick layer of dust. It has been 9 months since I had to have help getting in and out of bed or getting dressed. I now cook every day. My family eats homemade bread. I'm back to sewing for my girls. I have almst forgotten what it feels like to be so stiff that I can't move. I still take an occasional Tylenol if I'm in pain. And, wonder of wonders, they actually work. I feel marvelous. If it sounds like I'm bragging, well, I am!

If you have the opportunity to try Enbrel, you should. I realize that it is hard to get, the waiting list is long, and it is very costly, but it works great.

Hugs,

Cindy

That is awesome, Cindy. Go ahead and brag, I will be right behind you.
I feel the same way..."AS"..what is that???? It is all too easy to forget.

Like Cindy said, if you have a chance to try Enbrel please DO.


Betty (The Energizer Bunny)

HI,
I get forgetful too. But I am not on Enbrel. I just received my letter from Enbrel yesterday and I called my rhuemy for my prescription. I can't wait to start on Enbrel. I was on Kineret shots for three months and didn't see anybig improvement. At present, I have a major flare-up in my joints on lower back and hips. I am having difficuitly just typing here. Wish me luck with Enbrel.
Dan

Cindy,
ARe you still on Enbrel?....I finally got my enrollment number from Enbrel. I am just waiting to get my insurance to send it to me. My question is, are you still taking enbrel and how has it help with AS?. Did you get a prescription from your doctor for Enbrel?....Have you had any major/minor flare-ups?....I don't want to start Enbrel if I am going to get flare-ups. I am on one now its...been two weeksand I am beat. I was taking the Kineret shots, seem to help, but my doctor took me off the Kineret and wants me to start on the Enbrel now...
Dan

Sorry I didn't see this post sooner. I was in school since early this morning, then spent the rest of the day running around with a girlfriend. Just another day in the life of an Enbrel user....

I've not had a flare-up since starting Enbrel.

I'll be glad to answer any questions I can. I promise to check back here every day.

Hugs,

Cindy