February 1, 2018
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?
February 1, 2018
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?
Hang in there. It does get better.
February 5, 2018
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.
February 22, 2018
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?
October 23, 2018
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
October 23, 2018
Can you tell me how Actemra worked for you?
April 11, 2018
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.