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

Cindy you are such a good person. I am sorry you are in a flare, You can still get them on Embrel just not as frequent ask your Dr. for somthing stronger for pain. INSIST! If you have not gone up the steps before that could have done it. Take care Rose

Rose,

I understand your frustration perfectly. My sister also has AS. When her back/hips started hurting her, she only weighed 110 lbs and was almost 6 feet tall. Her doctor told her it was because she was too thin. Of course my back/hip pain is caused by being too heavy. Genetics has nothing to do with it. Hello?? It's just something a doctor can use on you. Put you into the guilty mode and make your condition your fault. Every time you look in a mirror, you're reminded that you gained weight. No one has to tell you. That's depressing. And trying to lose it is no picnic, especially with the meds working against us, and the pain that inhibits our exercise. I realize that many AS sufferers are extremely thin, but perhaps this problem goes both ways?? I have had diarrhea for 11 months and have only gained weight.

My doctor told me it was all in your head to gain weight while on steroids. He said that my weight gain was caused by overeating and not enough exercise. I asked for pain meds. He suggested a course of steroids. I decided that the side effects would not be worth it. I said no to steroids, and the doctor said no to pain meds. And here in WV, it is very hard to get pain meds unless you're on your deathbed. I wish I could have tolerated Tramadol. Oh, well, I guess I'm in the mood to vent.

Congratulations to Myra. You need to post pictures of her new babies.

Hugs,

Cindy

I woke up this morning and couldn't move. I was feeling really down and then recieved a phone call from a Dr here that is taking part in the Enbrel study. They wanted me to participate. I felt so much better... emotionally if not physically After doing my stretches to get this bod moving... atleast this am with a smile along with the tears.... well got another phone call. The doc had just recieved a fax, called the company and nope no more people being added to the study. So now I am on a waiting list. Sometimes I wish I wouldn't answer my phone. Or wish they had called on a day when I didn't feel like a mack truck ran over me... realized they missed a spot..backed up and did the job right. I really really hate this crap!!!! But I love you all for letting me vent about it here. Thankyou
Take care

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

Pam,

I don't know if this will help or not, but have your doctor call Immunex again, and ask if you can be part of the study in Philadelphia or another area. And then be transferred to where you're at. To my knowledge the Philly site is not up yet. It is the site I'm out of. I've never been there, but that was where the extra slot came from for me. If this doesn't make sense, write me, and I'll try to explain again. I think it's worth a try.

Hugs,

Cindy

Cindy, Thanks for the congrats. If I can figure out how to post the pictures from my digital camera I will put the whole gang on our site. Ya know if the weight gain and the pain are in our heads then why can't we think ourselves thin? Steroids do cause weight gain, that is a fact. In Florida Drs. are all to ready to give you pain meds. They are overrun with geriatric patients and I think if they give you meds you will leave them alone. I hope you feel better. Keep in mind that the E will help make the flare shorter. Rose

Cindy,
Thankyou... I will give the doc a call tomorrow and see if that is an option.
How is your neck today?? Hope you are doing better.

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

Paul,

Glad to hear that you are doing so well!



Betty

Hi there!
Just wanted to ask.....how did you go about finding out if there are any studies on Enbrel going on right now???
I've crashed on so many meds......and would like to try a new med......as the pain is unbearable some evenings.
I could call my rheumy, but Arthur just quit his old job....and i'm not sure how long before they cancel out his health insurance. We're signing up with the same HMO in 30 days at new job.....

thanks for any tips Pam!!


Toodles!
Angie

Okay, it's official. I'm in a full-blown flare. The pain is bad, but I have had it a whole lot worse. The interesting thing is I have absolutely NO stiffness, thanks to Enbrel. Really weird. Still have the brain fog.........

Hugs,

Cindy