Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...

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orencia

JCRockstar
JCRockstar
been on orencia for 6 weeks now. previously on xeljanz. since switching to orencia i have been in extreme pain. it's like i'm not taking any medication at all or at least that's what it feels like. i sometimes think that after it actually induces a flare after taking the shot. of course if ask my rheumatolgist and he has no answers... i swear, the experience i have had with rheumatologist almost makes me wonder why these doctors decided to go into this field because most are of no help at all. it's crazy... :) i was told orencia takes a long time to work. i just hope this pain and swelling i've been experiencing since going on orenica will go away. i've actually had to start back taking prednisone in order to function.

anyone else get worse before you got better on orencia?
deleted_user
deleted_user
Can't speak to that but just want to say that I agree about wondering why the rheumatologists got into this business in the first place. They seem to dislike patients, sharing information, empathy. Hope you get some good results soon.
Dreamchaser-Linda
Dreamchaser-Linda
From 2 to 5 months I swear it was just water. I'm on infusions. I swore someone was stealing my orencia and just putting water in that infusion bag. There was no improvements, except my fatigue was better. It took over 6 months to feel it, and 8-12 months to feel freaking awesome. It's the slowest bio to work.
The 3-4 infusion I got the worst flare ever, but I was pretty stressed from work at that time.
Don't give up!

Lin
JCRockstar
JCRockstar
thanks guys i appreciate it.... i'm going to stick it out for sure... heck, what choices do we have but to stick it out, right? :) and it is so wonderful to hear that some of you have actually gone into remission. i am so looking forward to that!!
Dreamchaser-Linda
Dreamchaser-Linda
I'm not in remission, I still get flares, but they are small flares. And I still have good days and bad.
But when I say I feel awesome now, I DO!
Went from wheelchair, to walker, and now I just use a cane. But I do so much now like, grocery shop, go out to eat, movies, real normal human stuff! I truly do not care about remission, as long as I feel pretty normal.
Been on orencia 2 and a half years now.

Lin
JCRockstar
JCRockstar
lin, i am so glad you have a better quality of life now.... quality of life makes such a huge difference.... wishing you continued blessings!
Christine26
Christine26
I was on Orencia for two years before it stopped working for me. I actually don't remember how long it took to kick in, but I don't remember feeling awful while I I was waiting for the Orencia to kick in. It worked well for me for two years then the stiffness and the aches started to set in and I was switched to another biologic. I am now on Rituxan. I believe it is working, but will do a wait and see to see if it is really working as per MD suggestion.
joycerob7
joycerob7
I have been on Orencia for 10 months now, along with sulfazalinze and predisone. The drug took 4 months to kick in, then started to wane at the 6 month level. I feel like I'm injecting water for the last 3 months, I'm flaring all over even though I'm on the other drugs. Don't know if I should just start over again with something else. Has anyone had a similar experience?
LynnRivers
LynnRivers
Well Orencia hasn't worked for me. I just had my #8 infusion (or six months). My inflammation hasn't come down at all. Still on the prednisone to keep functional. I have to officially give up on the Orencia...

Enbrel worked well for me for almost 4 years, then failed, next Humira (3.5months) did nothing, now Orencia (6months) did nothing.

I think I'm now in the category of having "refractory" RA. I have an emergency appointment with my Rheumy on Thursday to discuss what's next. I'm gonna guess Actemra, but we'll have to wait and see.

I'm on MTX too but it has never really done anything for me.
JCRockstar
JCRockstar
yea lynn, i've been on the shot now for 7 weeks and have has some of the worse flares since being diagnosed. i am in constant pain and have been since i switched to orencia. my hands will freeze up or my fingers will and i either can bend them or they bend and i can't straightening them... usually my left hand ring finger is the worse. not sure what's causing this horrific pain i'm experiencing but it is unbearable. i swear it truly does feel like the orencia is causing the flares... i don't know.