Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I think I have to come off of Enbrel.

Thanks Sham.
Yes the Enbrel has been a miracle for me too, but now I'm getting a few complications along with it. I have been on it for 4 months I think, maybe 5. I am super sensitive to medication in general, so if there are any side effects, I usually get some of them.
Take care,
James

Hi Jeff,
Actually I had a very difficult time with Remicade and Humira in the past, which required hospitalization for both, so I was surprised to get this far on Enbrel. Biologics do work for me, I just don't think I can have them anymore.
Take care,
James

Hi James.
Well that just bites.
I'm a little surprised that your doc didn't tell you to stop the enbrel immediately if you were having a pretty bad allergic reaction. And what you describe about the breathing and stuff - yikes - an anaphylactic reaction is nothing to fool around about. I know YOU know this, just surprised your doc isn't more concerned, know what I mean?

But ya, ugh, this really, really bites. So are you thinking of trying to find an alternative med? Hopefully your doc has some suggestions. I so hate that feeling when you know enbrel isn't working so well anymore... I'm with you on that one! Hugs to you.

Promise you'll go to the ER if you have any more breathing issues.
Let us know how how your apt with your doc goes.
Fingers crossed for you.
And I'm so sorry this is happening... wish enbrel had worked a little better, and a little longer for you.
Hugs

Hi Guys and Gals.
I only have a minute while my wife gets dressed. I wanted to tell you that I am heading over to the ER to get looked at. I'm a little worried about going back to sleep, and since a doctor appointment can't happen withing the next 36 hours, I might as well go get checked out now, while I still have some blisters as evidence.
ok gotta go.
Take care,
James

Good luck James I hope you find some respite, somewhere

Thanks Read,
I just got back and I have some news. The doctor I saw at the ER said I am definitely having an allergic reaction. I am told to stop the Enbrel immediately until I can discuss it with my rheumy. He said my Rheumy should find me something else to take.

I got a shot in each cheek, one for benadryl and one for a steroid. I can't remember the name of it though. I also have a new temporary prescription for Medrol (pak) 4mg and benadryl capsules 25mg which might be the same steroid as the shot, I think. They didn't keep me there more than an hour because it has already been 6 days since my last injection of Enbrel. He said I was lucky that I suspected something was wrong and decided to see them before my next injection though.

I'm feeling better now as far as breathing and itching goes, except now the benedryl is making me too sleepy and it caused me to date the discharge papers as 07/11/03. The nurse got a chuckle out of it, when I told her I was too tired to remember the date.

My blood pressure was around 157/98 and pulse was about 109. I'm not sure if this could be a part of the reactions though.

Time for me to find a snack then lay down. Also, Brenda was told to let me sleep in the recliner too because I told them my breathing improves while sitting up during these episodes, so I'm going to put my things over by the recliner.

Take care,
James

Sorry to hear this, James. I hope your doc can find something else that you don't react to. It seems so desperately unfair that you have such debilitating AS and can't take any of the effective drugs. I guess you're in a similar situation to Kevin where it would be great to prevent further damage but the necessary drugs are dangerous for you.

Wendy, I so agree with you..just seems such a shame that there is SO much out there these days and some of our kickers are still having a rough time finding something to help.

I know this being the 4th month without my remicade is really testing my faith, life, purpose...just to press on each day on narcotics is no way to live..alot of days I just do without because I dont like the way they make me feel.

Hope you are doing well, miss you!

Whew, reading this thread made me scared for you. Glad you went to ER and got checked out. Sorry about the difficulty finding something that will work for the AS. Hope you are feeling better soon.

Hi,
Don't worry anyone, I'll be fine as always. Also, I know what I'm doing... as long as I have you all by my side giving me advice lol. Thank goodness for KA. If it weren't for the responses I got today I wouldn't have gone to the ER to get looked at. (I'm a little stubborn like that)

I couldn't sleep because I feared the breathing problem would come back in my sleep, so I went to another forum (computer related forum) to help other people out (computer related stuff). I'm going to go try sleeping again now.
Take care,
James.

By the way, I know there are some Linux users here so I want to mention that I am user "ankspo71" at http://ubuntuforums.org/