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

Ki,

It sounds like either you got the placebo or you're of the small percentage that Enbrel does not help.

What mechanical damage I had before I started Enbrel, I still have. So I still struggle to put on socks, but the morning stiffness is only a memory. ANd the pain levels have dropped to the point that, if I had pain meds to take, I would only need them once a week or so.

Hang in there, when you start the open label part of the study, then you'll KNOW.

Hugs,

Cindy

Recently, I have had problems with the needle.
My meds will come out of the needle !!!! Yikes

This last time that I went to the research clinic, they gave me 8 doses to take home. The first 5 were fine.....than the last three did not work. Nothing came out. The plunger would not move.

Called the study coordinator. As always....he was rude. (don't get me going on him or else this email will take up all the available memory). He noted that this was impossible and that either 1) I left the cap on 2) I froze the meds. Well, I did neither.
He did not believe me.
He wanted me to come to the site on Monday so that he can give the injection. I do not have the time due to work (PS...I will take the needle next time that I go).

I did go to a local independent pharmcy that sold me neddles for .25 each...I got three.
I'm back in business.

Betty (The Energizer Bunny)

Betty,

Immunex is supposed to give you extra needles. I think your clinic is snitching!! Every month I get a zip-loc bag filled with alcohol wipes, cotton balls, bandaids, and extra needles. Last time they gave me 10 extra needles!! They said it was very common for the needle to "plug up" and not work. After all they are very fine. Roger tried to use one of my syringes and needles to give a newborn calf some antibiotic, (rather than one the size of a pencil lead) and the meds were too thick to go through the needle.

My study coordinator has always been nice. There are times she is really busy, but she has never been rude, and has always promptly returned my calls. So if you could transfer to Altoona......... Maybe he just needs an attitude adjustment. Threaten to call immunex, or call the study doctor. But whatever the case, you should have been given extra needles. I've never had to use any of mine, but I have about 4 dozen, just in case.

I'm not quite an energizer bunny, I still need my naps. But I've managed, with the help of my kids, to paint and wallpaper 4 rooms. The kitchen involved removing z-brick, floating the mess out with joint compound, sanding, sealing, etc. I also sealed and painted the ceilings. I'd work a while, wrap my rollers and brushes in plastic wrap, go take a nap, then get up and go at it again.



Hugs,

Cindy

Thanks Cindy.

Having three kids and hearing that enbrel can stop or reduce the disease progression was enough for me to be willing to participate, even with the 50/50 of a placebo. This six months may be a waiting game, but these studies are the only way to get drug approval. If any of my kids have AS, I want every available resource going toward "remission". So...I'm sure hoping it's the placebo and not that it isn't effective on me. Lord willing, I'll be getting the real thing at the end of the study.

Ki

Hi Paul,
I have blood taken only every two months. My veins are easy flowing and I've never had problems with that.
You get a physical every month?? I only go every 3 months now. If I feel something is not right though, I have my rheumy's private pager number so I may call him when I want. Every time I go see him, he asks me what I'm doing there!! Laughs because he sees I'm doing fairly well.
Take care and keep kickn' AS,
mars

Hi Paul,

I have not seen any change when they take the blood. Maybe they need to change arms or spots because that vein could be getting week. Just a thought.
Hope next time is better. Keep us posted... ...


Betty (The Energizer Bunny)

Sorry, I didn't see this sooner. I usually have no problems with blood draws. But I make sure they rotate sites, and occasionally I get a tech that will try a smaller vein, in a new place, just to give the "good" one a break. She said the only difference is that with a smaller vein, it takes longer to fill a test tube.

Maybe you're running out of blood????

Good luck.


Hugs,

Cindy

I have been on Enbrel for 9 months. All very positives results. I'm 40, and had AS since I was 19.

Prior to the Enbrel
I was severely bent over, walked with a significant limp, unable to put on socks. Very bad pain in my hips. I needed a right hip replacement. Very little movement in my neck, unable to lift my arms over my head, the shoulder always hurt. A typical AS person. Life SUCKED. Depressed, angry, I felt sorry for myself.

During Enbrel
After my first injection, I felt positive results. The flare went away, I felt "clean". I had no stiffness at all.
After 9 months, I'm running, playing basketball, even bowling. I loved to bowl and thought I would never do it again. Last week I bowled a 241, 226 and a 257. Now, not all in one day, but is was over a 10 game run. I'm able to bowl about 10-15 games a day without any pain meds. Unbelievable.

Results
I'm standing perfectly straight, able move my neck, I'm not doing a Linda Blair, but significant movement. It keeps improving. Almost able to touch my toes standing up.

Side effects
After about six months, I started experiencing headaches almost on a daily basis. I talked with my Rhemi and he said it was not the enbrel. I talked to Immunex and they felt it wasn't the Enbrel. In the last month, the headaches went away. No other side affects.

Future
I pray that enbrel continues to perform. I'm looking forward to turning my head, touching my toes, and playing with my 5 month old Son Dylan. Something I couldn't do when by daughter (10) was born.