Orencia anyone? | Arthritis Information

Julie... anyone...

Is anyone on Orencia? I want to try it since Remicade isnt that great anymore. I was looking into the Rituxan but its too scary... not enough studies on it yet for me... and too many deaths.

Just wondering if anyone is liking Orencia?

thanks!

I was going to ask the same thing.

My doc said that the only people that may have any experience with it must have done the trials.

He said that the studies looked really good and safe for the most part. These regular TNF blockers aren't doing their all for me anymore.

I was given the Orencia pamphlet today - 30 minute infusion once every month. Much better than Remicade.

I was just hoping for some real experiences from anyone here.

In the meantime, Humira is going back and I'm going to try Enbrel again. (Was on 25mg, now I'm going to the 50mg).
PdxLiz38833.5113888889I have had one infusion of Orencia and this Friday will take my 2nd one. No real noticable difference yet - I really don't seem to be as stiff in the mornings and maybe just maybe not as achey as usual (mind over matter or the orencia? [QUOTE=2manyaches]I have had one infusion of Orencia and this Friday will take my 2nd one. No real noticable difference yet - I really don't seem to be as stiff in the mornings and maybe just maybe not as achey as usual (mind over matter or the orencia?Good luck to any & all who try Orencia, or any new drug. It's a frightening thing to start a drug, when we have no idea how we will react to it. Those of us who come after you learn from your experience - you make the road a lot easier for us. I'm scared but hopeful. My first infusion is due May 9th. Doctor said not to expect much change for about two weeks. Took Remicade for about nine months but developed resistance to it. Here's hoping!Had my 2nd infusion yesterday and I worked today and am not having that totally exhausted feeling I usually do and can tell for sure today I am not as stiff, sore, and swollen. Today I am a very happy person!

I am currently waiting to get more information from the manufactorer about a possible side effect I had with it. I think it was coincidental but after having the infusion, about two days afterwards my breast swelled about 2 cup sizes. My upper back ached and spent abit of time in bed trying to rest my back. My RD was convinced I was pregnant although my tubes were tied. That wasn't the case.

It has been about a month since my infusion and still waiting for my breasts to get back to normal. My cycle had come and gone with no changes.

Has anyone heard of anything like this? I believe I will be making an appt for the gyno because I am worried about it but the RD is treating it as a reaction for now, since it is a new drug.

Shandi

Well after my second infusion I was feeling great until about four dyas later and my left upper leg muscle and right upper arm muscle were so sore, painful , red, and swollen like a very very huge mosquito bite or hive - rheumy says my muscles were inflamed - he said it wasn't from the orencia, the manufacturer said it wasn't the orencia - I said no more orencia!!! There is so little info on this drug and I can't say for sure this is what affected my muscles, but they can't say for sure it wasn't. Keep us posted on what you find out. Hugs and good vibes. I am on my 3rd infusion of Orencia. I can't tell the difference because I am on 10 mg of prednisone. I will be tapering off the steroid within the next few months. My period came early this time and I'm not sure if it is from the Orencia or just hormonal changes. I'll Keep yah posted.

I need to make a change.

I have done Enbrel, then Remicade so I may give the 3rd TNF Humira a try or maybe go for something different like Orencia.

Anyway thanks very much for the reports.

Rituxan is a twice a year infusion but that too worries me. Although I like that it's only twice a year....what if it doesn't agree with me and I've got 6 months worth in my system? Does that sound stupid? Or does that make sense?

I've used Humira successfully for two years but recently started having some problems that required me to stop using it. The other TNF blockers are too simular so it's ruling those out.

I started on Orenica back in July and so far have been having some wonderful results and no side effects so far that I have noticed. I love that it is just an hour instead of the 2 hours plus for the Remicade that I had before!
I was in the phase III clincial trial then on it for about 5 months afterwards. I had pretty good luck with it but had to stop after getting the bills for the treatments.10% of 00 was too much for me monthly.I still had " Bad" days with Orencia but I didnt have any major flares that would put me down for days at a time. Good Luck!

Thank you for listening.