I have been on Orencia for three weeks now and it seems I’m in more pain now then ever. I’ve tried Humira, Enbrel and now this. The only thing that works for me is Prednisone but my doc won’t prescribe it, only for occasional flares. I’m at the point where I’m seriously considering quitting work because the pain is more than I can handle. Any tips, pointers etc?
Can you take intermittent Family Medical Leave and cut back to part time? This will give your body more time to rest.
Orencia needs more time to work, BUT if the pain keeps increasing, call your doctor. It shouldn’t hurt worse. I ended up on Xeljanz pills as my biologic, but I tried several, including Orencia, before I found the best one for me. You have to find the right one for your body. It has to do with B cells and T cells. Prednisone typically isn’t used during this time because they need to know how you feel. Prednisone masks all of that.
This is the hard part. You may need to seriously look at cutting back on your work hours if you can. I’m not sure that FMLA covers everybody, so do some research. Do you have disability insurance? Would your doctor be agreeable to putting you on disability during this time?
Thanks for your reply KT. Yes, I am eligible for FMLA. Bad thing is I am in management and can’t reduce my hours. Mainly because of personal dedication, kwim? I’m 61 and am seriously considering retirement. I have a disability policy I can use while I wait for benefits to kick in. I don’t know how any of y’all get along. This pain is so awful. Sometimes I can tolerate it but then it gets like I lose all patience and all effort to push forward falls backwards on me.
I am also 61, on a prednisone “boost” for two weeks and then will start Orencia. I’ve already tried Humira (which worked great for 7 years), Enbrel, Xeljanz, Cimzia and Actemra. Did the Orencia not work immediately? I’ve noticed with the Enbrel and the Actemra that they did work pretty quickly but side effects were bad for me. I prefer to stay on injectables rather than infusion if possible. Are you on self-injections?
Orencia worked really well for me for 4.5 years. I would take it in evening with sleeping pill. Would stay in bed the next day feeling yucky and tired but fine the next day. I didn’t mind giving up a day a week. It was worth it
Hi Jude, my doc has me on Rayos. It is low dose slow release Predisone (I take 10 mg). It alleviates pain and swelling. I’ve attempted to go off it but the pain and swelling once again comes right back. You are supposed to take it at bedtime because studies show it goes to work within 4 hrs. That is supposedly the time it effectively goes to work. It is when it usually wakes me up. All it is is time released Predisone and boy is it expensive!! Like $9400 for months supply!!! I would rather take something for pain relief instead.
I take 800mg ibuprofen every 6 hrs. Does it seem to anyone that our Rheomotologists just don’t believe in any pain meds whatsoever? If I have a flare all she does it fill my up on steroids.
Sorry to read what’s happening to you. I’m I. The same boat. Just stated Orencia three weeks ago after humira quit working. Before that was on enbrel. I’m in so much pain I’ve had to go on leave. I’m on prednisone and sufasalazine too. I’ve never been totally off prednisone so I find it off your dr. Won’t give it to you to help. Just waiting for the orencia to kick in is not enough. I’d die of pain if me dr did that. Now I worry about if my temporary disability will be approved. Good luck to you!!! God bless.
@heyjude I can’t tell you what to do medically, but I will tell you about my experience with prednisone. For twenty-five years, corticosteroids were the only thing that worked for me. I was on as high as 80mg dosage per day, and it absolutely destroyed my body. Skin, bones, joints, and teeth, virually all gone and needed to be or still needing replacement is the legacy of my long-term prednisone use. If I were able to talk to my 12 year old self, I’d tell him what the doctors didn’t – that prednisone is awful. Again, I’m not allowed to dole out medial advice, so I’ll just say that my experience isn’t unique. In addition if you are in pain that is affecting your quality of life it might be worth to check in with a pain management specialist. They might be able to alleviate some of the discomfort. Keep on keepin’ on, DPM
Thank you for your reply. I stopped taking Prednisone a long while back. Had quite a scare with my heart and decided it just wasn’t worth taking it. I’m on Xeljanz XR now along with 8 methotrexate once a week. Can’t say I’m doing fine, I hurt like hell. But life goes on.