Improvement with Orencia? | Arthritis Information

 

I know there has been discussion on the board about Orencia, but has anyone experienced any real improvement on it?  I had my third infusion about 10 days ago and actually feel a little worse.  (I think it may be due to the fact that the Enbrel must be totally out of my system by now.)  I won't be going in for 4th infusion for two more weeks and plan to ask more questions.  I have been on many of the RA drugs and have never taken so long to respond.  I'm so afraid that this one just isn't going to work!!  The waiting seems like forever!!  Also, I know that if I don't start getting better soon, I'll be getting worse.  It's so difficult to keep a good frame of mind.   I have a great husband, two daughters and four grandkids and try to count  my many blessings every day.  My prayers go out to all of you who are struggling to keep the RA in control and trying to keep a healthy, positive attitude.

Hi Sharon.  I'm pretty sure there have been a couple people here with some improvement, but my foggy brain can't remember which ones they are.  I will say that my nurse told me most people don't even feel the gradual improvement until after the 4th-6th dose.  That's actually pretty quick compared to Rituxan (the last med I tried) which can take over a year for some people.  The waiting is always the worst thing for me.  I just had my 4th dose last week and am still waiting for signs.

I've just had my 4th infusion and can see improvement. It is gradual, and I'm hoping for more, but at least I can see a difference now.

I just had my 3rd infusion of Orencia last Friday and I can tell a very subtle difference.  I was on Remicade off and on for 5 1/2 yrs. and both my RD and I decided it wasn't working well enough to continue.  When I started Remicade all those yrs. ago, it was my "miracle" drug and literally turned my life around.  I did find out that when I finally quit Remicade altogether that it had been working "some." Being off of it for 3 1/2 mos., I was starting to feel really bad with stiffness and joint pain and the fatigue was off the scale!  My main concern was the fatigue because I never felt like doing anything especially exercising which I had grown accustomed to.  Congrats on the good results with Orencia, Bingethinker and Doreen!!  I know it's hard, Innerglow and Sharon, but please hang in there and try to be patient a little bit longer...........I think it was only after my 6th Orencia infusion, (that's a 4 month wait after the start-up doses, right?), that I began to notice an improvement:  At first I noticed that my "best days' were at the midpoint of the month - about 2 weeks before my next infusion. Then I realized that the "good days" had stretched into an entire week..............now, after being on Orencia for almost 6 months, I seem to have about 3 good weeks, and begin getting achy the week before my next infusion is due?  (Hope this makes sense?!!)  There are SO many variables though, (activity level, med regimen, weather/humidity, etc.), that sometimes it's hard to know for sure if it IS the Orencia that is helping, or a combination of things?  The waiting is the worst part, isn't it?  I won't let myself look too far into the future - I'm just grateful and blessed when I DO have a good day..........I pray for relief for all of you who are suffering so.........

Dogmom
Thanks to those of you who responded and also for your words of "encouragement."  It's good to hear that you have improved with the Orencia, and hopefully you will experience more improvement with time.  I guess I just have to be more "patient."   It would be easier if I knew the outcome would be a good one.  But nothing is "for sure" in life.....you'd think I'd have learned that by now!  Thanks again, your comments mean a lot.
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