Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group ENBREL Side Effects???

Hey pal
i certainly was not correcting you! Just making sure that I had your story straight. I was wondering if you went off the Celebrex due to anemia reasons. Extra Vit C always helped me absorb my iron when I was on NSAIDS...just a thought.

Feeling wonderful on the prednisone, too bad it ends in 2 days

I am on my way south to start building our playland!

You sound (if you can sound in a post???) chipper, are you doing well?? Pain at bay??

Regards!

Sister Ellyn

You sisters are cracking me up. Maybe I shouldn't laugh too hard. You could always go back and find the posts when Betty and I first started Enbrel. I got mine 2 weeks before she did. And we compared notes and PM'd quite a bit. We are in the same clinical trial, just different parts of the country. Only 277 (don't quote that, I may be mistaken) patients are in the study we are in, so you could say we got lucky. I think we are the only ones left in the study that post regularily.


Hugs,

Cindy

I am only one; but still I am one.
I cannot do everything.
But still I can do something;
I will not refuse to do the something I can do.
Helen Keller

Holly,

Thank you for your response. My Dr. is having some trouble getting the Remicade approved by my insurance and is asking if they should proceed with trying to get approval for the Enbrel. Of course, I HATE needles so was trying to take the chicken way out. Thought with the Remicade I could get away with not having to self inject and would be less frequent. I started reading this email chain at that point and have found it very informative. If still a little bit scary.

Was a little worried about starting the request for the other medication with the insurance company until we had the final response on the Remicade. Didn't know if it would effect the outcome.

By the way, loved your Harry Potter reference.

TB

Cindy,

Yes, that sounds very close to the number of folks in the study. It may have been even less. When I have time, hope next weekend, I will use these gals here to draft a letter to the drug company.
I think that I may wait until my next visit in Oct before sending the letters. I want to talk to my doc to find out how hard he wants to fight or if he wants to try something different.
I do not want to make too big of a deal about this until I talk with the doc. He might have some great ideas.

Betty

Hi, Betty,

The number started out at 200 for the original study. I ended up being number 201. But the last forms we signed mentioned how many patients. I'm thinking it was either 277 or 266.

I'm hoping to ask the doctor about my long-term treatment options tomorrow. It's scary, really. I hate to be plunked back into where I was before Enbrel. Now that I know Enbrel works, it's going to be hard to convince that I'm better off without it. Living dead was what I was.

He wants me to show up without taking any pain meds just to see how I am really doing. (Currently Vicoden 750) Even I'm surprised at how much pain I'm in. So I guess the Tylenol I took once in a while way back when did help. I haven't sleep for longer than two hours at a time and I can barely shuffle around the house. I haven't been anywhere since church on Sunday. I don't know how much more I can take. I have ten hours of travel ahead of me for tomorrow. Hopefully I'll look like something the cat dragged in (I know I feel that way), and they'll have mercy on me and start some good pain meds. It's funny how something so simple as a little pain control can improve your life.

I have a new insurance, and it doesn't look like the arthritis clinic is going to accept it. They said it can't cross state lines, but I KNOW better. I called and asked the insurance. Cleveland Clinic accepts it and Cleveland is a long way from a West Virginia border. I told the clinic over the phone I'd stop in and talk to them Thursday. They'll have to look me straight in the eye and tell me it's too much bother to fill out the forms for just one patient. Hopefully I can talk to a big cheese in that dept. I know I'm only one patient, but I really, really want to keep going here. I'll probably make a fool out of myself, but I'm desperate. In order to stay on Enbrel, I have to have a doctor willing to fight for it. I think my odds of having that will be greatly diminished if I have to start doctor shopping again. Cross your fingers for me.

Hugs,

Cindy

I am only one; but still I am one.
I cannot do everything.
But still I can do something;
I will not refuse to do the something I can do.
Helen Keller

Well, Cindy, maybe you and Betty are just our older sisters. Older as in time on Enbrel .

Ellyn

Hi Cindy,

Good luck. Find out lots of info for us.

I called my insurance again.
I asked if they would approve Remicaide or any home infussion. The answer...NO!

The only think the plan seems to cover is the office visit and pills.
What a ucky plan.
.....and I work in health care??????? You would think that my company would believe in buying a good insurance plan.
They do not seem to understand when our patients with brain injuries do not have food coverage, yet they do even cover their own employees well!!

The insurance rep is researching for me the exact meds that they will cover and that are approved for AS. I will let you know what they come up with. I have a feeling that it will be very limited.

Betty

Betty:
A thought...how about talking with your pharmacist, could he/she or someone construct Enbrel in another form other than injection for you? Long shot, but a thought. I know that due to the protein nature of Enbrel, we cannot eat it, as our digestive system would digest it, which is why we need to inject it. Maybe they could formulate it in a capsule that would resist the HCl in the stomach??? Total long shot, worth asking...

Ellyn

Hello, Sister Ellyn!!

I was sincere about the correction! I should have caught it but I was sleepy!

I have been feeling better, pain wise but just kinda icky otherwise. I think it is stress related...my job sucks right now. The stomach probs are still there but I know they are not as bad as they were. AND, yippee, I did not bruise myself with Tuesday's shot!! That makes two with no bruises. Maybe, just maybe, I am getting it!! 'Bout time, eh?

I am glad you are feeling so good on the prednisone and hope you still do after you come off it!

You better hurry and get here so we can start construction!!

Talk to you soon!!
Sister Holly

TB,

I hope your doc has luck with the insurance company and Remicade! I was a HUGE chicken about the injections!! I waited an entire month before I got the prescription filled! And then almost chickened out the day I was supposed to learn how to give it to myself!!

BTW, What insurance do you have?

Good talking to you!
Holly