Yet another Orencia question...sorry. | Arthritis Information

I'm quickly running out of options with TNF drugs. I was on Enbrel for several years until the effect of it faded out. Then tried Remicade which I don't think really did anything I just wasn't in a bad flare so it took a while to feel truly crappy. The next was Humira which I wanted to switch to instead of upping the dose of Remicade for the convenience of being able to inject at home. I only took 5 injections of it, but was also on 100mg pred, and 17.5mg MTX. I ended up with shingles and cellulitis and was in the hospital for two weeks. Under the advice of my PCP I persuaded my rheumatologist to switch back to Enbrel which the PCP felt might work again and would be safer for me.

Now on to the actual topic. I've read lots of posts here about Orencia not working well. To those that had to stop it. Did you notice any improvement for any length of time before it eventually fizzled out? I suppose I could go back to Humira since it did actually seem to be giving some relief. I also still have several oral DMARD's that I haven't tried. (Arava, cyclosporine, imuran) Rituxan is the only one I'm pretty set against from all the negative reports about people developing PML or something else happening to them.

thanks

Bob

Bob, I haven't had to stop Orencia, but I would if Actemra came out, so I'm gonna reply with what I do know. Orencia is working only about 10% for me, not enough to continue if something else were available. However, I have heard some people don't get full results until as long as a year, and I've "only" been on it since April. The improvement started around July and hasn't increased or decreased since then.

I also take Imuran and have for a few years. I tried Arava and had bad side effects from it. As for the Rituxan, I tried that, at least one round of infusions, and when I saw no improvement at all, my doctor moved me on to Orencia. I don't know if more reports have come out, but the PML reports I saw were specific instances unlike my case and not very many. I do understand however with your reaction history that you might be apprehensive about it.

If you want to continue trying anti-TNF drugs, you might find out if a Cimzia study is being done locally to you. This drug is already approved for Crohn's (so there's a bit more confidence on safety than a first time drug) and is now being tested for RA.

Hi Bob I have been on Orenica since 2006 It has worked fine not "Awesome" just fine. I have had some minor flares here and there. I do have to say I did hault my infusion one time and tried to do the natural thing. After 60 days of pain misery and suffering I broke down and got back on the Meds. I know it's not a cure-all but it has helped me maintain a somewhat normal lifestyle. I am now able to shop at the mall with out having to sit down every 15 minutes. I can walk in the park. I can climb a mountain. "SIKE!!. On a serious note this drug does not work for everyone but I have to say that it is working for me right now. I don't have to use a cane. I can't knock it . Don't get me wrong I do have some bad days like the month of December my right knee has been inflamed, but I'm still able to walk. and not bite anyones head off from the pain. So you might want to think hard about the orenica meds and give it a try and see if you get results.

Good luck

Orencia, Fosamax, Folic Acid

Dx 13 years now