Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Remicade NOT working-what next?

I hung in with Remicade for a year with no help from it. It just made me really sick. I have tried so many that the dr. says that he won't treat me with any more of the drugs. I can't take steroids any more because my intestines have gotten so thin that they are concerned about tears. I am just treating pain.

I hope you find something that helps you.

Blessings.
Possi

bummer!

but sure do hope the enbrel works!!!!!

Hi Mig. It'll be interesting to see where I end up after going off Humira for a month or more. I think I read that Humira has a 1/2 life of about 2 weeks so after 6 weeks+ it should be down significantly.
My next Rheumatologist appointment is June 24th so I'll be without it until then when I have a talk with my doc.

Hey Timo, yeah, it will be interesting to see how much if any change you'll notice. With Remi, a 2-3 week treatment delay (my norm is every 8 wks) causes my disease activity to sky-rocket right back to past familiar scary levels. For a lot of people, it seems to creep back on them much more slowly. I wonder if the level of response in the first place is any indication?

That will be good timing at least, with your Rheumy appt!
Hugs!!

For anyone who's changed from Remicade to something else...did you have to wait a period of time for the drug get out of your system? i.e...on an every-8-week infusion, did you have to wait 8 weeks to start something new? Granted, it's not working, but it's still in my system even though I don't feel it. Anyone know the half-life of Remicade?

Timo, hope you get something that will help you!

hi rumble:

besides mtx, 800 mg ibuprofen (3 times a day) and lunesta to sleep at night because my si joints and neck pain keep me up at night. that pretty much keeps me sane.

although the bad days are just bad days and no meds help at all. i know you experience that too.

there's also another "mab" out but i forget the name. perhaps that is an option. pls discuss with doc.

take care, leslie

rumble:

even though remicade is not working, you have to wait the full 8 weeks before switching to another tnf drug. i remember being told that.

leslie

I figured that would be the case. Otherwise it would be like using 2 TNF drugs at the same time, which is a no-no. Feeling pretty miserable about now. ouch ouch ouch ouch.

Enbrel it is.

Had visit with rheumy on Wed. He said he'd like to try one more TNF drug before bailing to something else, but that they were self-injectables. I told him that wasn't an issue, I'd done injections of imitrex in my migraine days. I picked Enbrel because it is a different mechanism than 'mab'. Asked him if I needed to wait till 8 weeks after last Remicade and he said that they often give Remicade every 4 weeks, so anything after that would be okay. So once insurance approval is done, I'll come in to have the nurse show me the proper technique on first shot, then do them myself from that point.

Didn't ask if it would be the once a week or twice a week shots. Isn't it based on your response? Once a week to start, then if you lose effect in 3-4 days, then change to twice a week (lower dose)?

Read the literature they gave me...looked like 2 different injectors, plus the multi-dose vial. What does everyone use? (May start another thread on this, huh?).

good news! and hope it works well!