I haven't tried Orencia, but there are a bunch of posts about Orencia, sometimes asking "Orencia vs Rituxan." Hopefully, you'll get some good responses.

I'm presently taking Rituxan, so I'm curious about your experience with that drug. How long were you taking it before you quit getting good results? Did you have any side effects, and when you had treatment(s), how long did it do well for you?

I just had my 4th treatment last month, and so far, it's been amazingly good for me. It has been causing flares of eczema, but nothing else.

I hope you don't mind my asking, but did you consider Actemra, per chance? Since it was only recently approved in the US, it may not be an option in the minds of a lot of RD's, but it is another alternative to TNF-inhibitors.

Also, would you mind sharing what you know about biologics causing lupus? I haven't heard that (or it hasn't registered), and I'm sure many of us would be interested.

Thanks, and best wishes to you. I hope you find magic.
doug

I had been on Orencia for the past 2 yrs.I just came off of it last month and will go on Simponi. Just waiting for approval from insurance company. Orencia stopped working for me. I have also been on Remicaide, Enbrel and Humira. If Simponi does not work or me in the next three months, my doctor plans to then go to Rituxan. Good luck with the Orencia. I hope it works for you.

I just took my Orencia infusion this week. Marks my 6th month annivversary. I saw subtle changes initially. But certain joints like my wrists seem to be improved. Also my fingers aren't swollen, however my knuckles still are. My feet have been getting worse and my knees are not too good either. With all that said my "energy level" is fantastic! I seem to have boundless energy on most days which makes dealing with any pain much easier to control. Good luck with your treatment. As I said look for subtle changes after the first few months.

Hi,

I hope the Orencia works for you as it has a different T-Cell mechanism. Please make sure that you keep up with your CBC and other blood work.

It didn't do anything for me.
I was also part of the Acterma Trail study for 6 months....
Didn't even slow it down..

BUT, please remember everyone's system is different and what works in one, may not work in another...and vice versa. so
I'm hoping that this is the one for you!

KR..

I used Rituxan for over a year. I think I had 3 round (6 infusions) total. My me having Lupus and Ra it seemed to help me more for the lupus type symptons (inflammation in my eyes, rashes, etc.). It only helped a little with the arthritis aspect of everything. I really didn't have any side effects when I was getting Rituxan except after my last infusion in April I felt really awful. I rec'd the infusions about 5 months apart. I did have a lot of infections when I was on the Rituxan but I also take prednisone, plaquenil, methotrexate so it's hard to pin it on just the Rituxan. The longer that I have been off the Rituxan the fewer infections I have had. Maybe just concidence or maybe not. I have not heard of Actemra. I will have to check into that. As far as the biologics causing LUPUS, it's not really that they cause long term SLE lupus but some can cause a drug induced lupus. One can experience lupus like symptoms when taking the drug but when the drug is discontinued the lupus like symptoms will go away. Initially when it was first suspected that I had lupus I was getting Remicade. My doctors had said the lupus like symptoms could be from the Remicade not full blown SLE. Eventually with testing and a skin bioposy it was confirmed that I had lupus not just a drug induced lupus. Most of the biologics approved for RA I can not use due to them making the lupus worse. I hope this helped answer your question buddhacat2. I thank eveyone for their comments. It's great to share info and learn new things.

I've not tried the orencia, but that is the one my RA doc is considering for me. She said that the research she is reading indicates that it is a better choice than some of the others for those of us that have both Lupus and RA. I wish you well on your journey.
-Caroline

i was on orencia for a few months but had to stop due to side effects. it caused severe low back and low abdominal pain. same with remicade for me. i didn't have any problem with enbrel, humira, or cimzia which i'm on now, so i don't know if my body just couldn't handle a whole month or two month's biologic dose at once or if it was something specific to orencia and remicade.

i hope it works well for you - i'll keep my fingers crossed - toes too!

I take MTX and minocyline with the Orencia and I don't get any infections. ( knock wood)

Do you take the MTX in pill form? I take the injectable form and it absorbs quicker and completely in my bloodstream. Maybe something to at least discuss with your doctor?

Also I am on low dose ( 200mg) of minocycline ( antibotics). It is a theraphy for RA. I believe that it has kept me healthy over the years.
I am not sure if having lupus your doctor will approve it, but again it is worth reerching and deciding if it is something you may want to start.

The Orencia is helping me although not 100%. But the fact that I am able to have energy is wonderful!!!!

Neither embrel or humira helped me at all. I am studying the new Actemra, but have concerns that it consiistently escalates your chloresteral levels.

I am also considering rituxin, but worry that to may cause problems. Both the orencia and rituxin work differently than other biologics.

Good luck on whatever you decide!

I have been on Remicade, Kineret, Arava, Embrel, Humera, and Oriencia. Humera worked the best for the lomgest. i tried Orencia and it put me in remission, but due to insurance problems was off of it for about a year. I have started back on it for 2 trips but isn't working as good as the 1st time.

I have been taking Orencia since mid July of last year. It seemed slow in starting, but it has helped me tremendously whereas humira and enbrel totally failed. I have not been on remicade because my rhuemy said it is too much like humira and would be a waste of time. Initially you have 3 loading doses 2 weeks apart. Then you schedule monthly appointments. I am not sure but check with your doctor to see if the Orencia promise is still being offered. It pays your insurance copay for the first 6 months or 8 treatments. Unfortunately, although I received a debit card directly from Orencia, the hospital was not equipped to take it. Now that my 6 months is up I need to contact Orencia directly to see if I can get these copays covered.

The effects of the drug were very subtle. I still get pain but not as severe. I haven't been in a flare since the drug took hold. More than anything for me, the Orencia has given me boundless energy. The fatigue that drags us all down haas in many ways disappeared. The bad news is the effects of the drug itself may already be waining. I see new nodules and deformities popping up. However, if I can remain energetic I will stick with the drug. Having energy allows me to push thru any pain I suffer with much more ease.

The infusion takes 30 minutes and I have had no side effects. I do take 2 benydral prior to the infusion as a "just in case."

I look forward to hearing how it helps you. Don't expect anything like hit you in the face results. It comes on slowly! hugs, marcia

Thanks for the info. bizemomm and your reply. I have had only one infusion of the Orencia so far. My Rheumy said to give it 4 months or so to see an improvement. I also would be happy even if the Orencia only gave me lots of energy and nothing else. I thank everyone that has replied to my post and wish them luck.