I was wondering has anyone tried Orencia. I was dx with SLE in 2010 and with RA in July 2014. I am worried about taking yet another drug. I already take cellcept, prednisone, plaquenil, methotrexate injections and now they want to add Orencia injections! (?)
Orencia will be my next drug too whenever i finally get clearance from a new pulmanologist to go on another IV immunosuppressives therapy. I’ve been on all the same medas you plus embrel,averia and a 6 month round of cytoxin chemo therapy . Im desperate to not have to live on a fentanyl patch ,morphine and need a walker so I’ll try anything
I had to switch to Orencia when my Enbrel faded and it has been good for me. It is an easier injection than the methotrexate and Orencia keeps the RA mostly in check so that I have fewer Lupus and Fibromyalgia flares.
I recommend Orencia highly. I am very happy with it for almost two years now.
Go for it!
Regards from Rosie
Hmm, Orencia seems to be good for RA but I don’t know for lupus. However, it’s supposed to help replace failed standard immunosuppressants. I would think your plan would be to get onto orencia and then off of MTX CEllCept might have to stay for the lupus…
Even better altogether is Rituxan, which is approved for RA (after failed immunosuppressants, and those can be considered failed if they’re not working for you, for either disease control or inability to tolerate side effects, which really are nasty for those, especially doubled up I’d imagine!) Rituxan was my rescue drug for neuropsych lupus, and to get it covered my rheumy had to hint at RA in my file even though it’s not actually relevant. He really believes in the power of Rituxan for lupus too, and it’s quite tolerable. I felt like I had a bad flu and/or flare for a day and a half, normal because it causes an immune reaction, then NO side effects at all and 6mo of major relief! Then I repeated it once, and by the 3rd indicated time, I was well enough to skip it to wait and see!
It really expensive currently, though my insurance fully covered it and the drug co. itself offers a copay assistance of $2k, and I hear it’s coming off patent (aka generic available) very soon. Talk to your doctor about it. It’s FULLY within your patient decision-making rights to be informed of all treatment options and make your own choice about anything they’re willing to prescribe (ie there are risks with Rituxan, a pretty powerful drug, even though minimal side effects for many people, like me!) But if you have a moderate-severe case, especially of both, not being controlled well by standard treatment, it sounds like the picture-perfect case scenario for people that benefit from it… Best of luck, and if your doc tends to be defensive, bring it up in terms of wanting to discuss all options!
Brynn
Thanks everyone for the response. I picked up my prescription yesterday and will give it a try. I went from being bedridden to a walker to currently a cane now. I desperately do NOT want to go back to that life! I can't go back to that life. I am single living with my elderly mother and my two married brothers almost put me in a nursing home when I was at my sickest and immobile. That period of my life MOTIVATES me to help myself at all costs.
I will keep you all posted.