Orencia

[Gigi]

I?m sorry if this has been asked before, but have any of you tried Orencia? Or the generic for Orencia?

I was going to try Rituxan , but I work with kids every day. I don?t want to end up catching everything
they get. I also worry the side effects would make me have to miss work.

Thanks for any info you can provide.😀

[markt]

They are equally targeted therapeutics, just acting on different B Cell antigens/costimulatory pathways.  I have been on Rituximab for a year now and it really hasn't made me overtly susceptible to illnesses (I am a Navy officer and work in public spaces/office setting).

I should add, I have 3 YO and 9 MO girls with constant exposure to others

[cccourt1942]

I have a close friend (real friend/in person that is) in our local Sjogren's group. She has been waiting on approval from her insurance company.  She waited nearly a year.  Don't know for sure if SjS was first or second dx...but the Orencia is for RA...and hopefully SjS.  A freak accident happened after her 1st injection, which was wonderful she said...but now treatment is temporarily interrupted.  Ritux was never considered.  She did try Methotrexate and had a reaction to it. 

ccc

[Sharon]

I've been on Orencia for over a year now and it has been a game changer for me
especially regarding pain and digestion issues.
I have not been sick since on it except for once during the winter with a virus that everybody I knew had.
Orencia is said to cause the least issues with susceptibility to illnesses of all biologicals.
You are welcome to join our Orencia Support Group on Facebook to learn more.

[Tharrell]

I also have been on orencia. While originally marketed for ra, it is considered for sjogren's. My dryness issues, eyes and mouth have greatly improved, but it is no longer working for the joint pain! I can't remember how long I have been on orencia, I kmow I started before Sharon, so I'm almost two years? I have been foghting with my rheumatologist for a switch. She doesn't want to, because my inflammatory markers are alway negative! Also when I come into the office my joints are hardly swollen. I have asked her about rituxan and told her that it also would treat my Isaac's syndrome! Right now I am back to asking for Embrel at least. I had a right hip replacement 2 years ago and it wasn't til 9 month later of pain and misery and normal x-rays that my orthopedist finally ran a neuclear scan that it was discovered that the bone never grew in to the stem. The orthopedist has no idea why this was the case. I had a revision with a longer stem. Two days ago I had to replace my left hip. Anyhow, I did a lot of research and finally found an article that pointed to a cytokines production of TNFa against the titanium hardware which causes the loosening. I immediately sent the article to rheumatologist and she agreed, but she said the orencia had some protective ability there. I wrote back that it must not have been enough since the bone never grew in and could we please start embrel like my first rheumatologist wanted to do before she left the practise. Her answer wad let's discuss it in person at my next appointment in November and not on my chart. So I guess that's a no again! My research also showed me that 10% of people will have negative inflammation markers with possitive disease progress. I shall bring that report to my appointment. So frustrating!

[Sharon]

So sorry to hear your pain returned Tharrell!
I must clarify that what keeps the pain at bay for me is Orencia conbined with AIP diet.
The diet alone did not help me enough but if I cheat on it, even while on Orencia,
the pain flares up again.

[Gigi]

Thanks for your replies. How soon did you all notice it helping ? Idk if I shd do Orencia or the rituxan.
I wish I had my old self back and didn?t have to make this choice. I would just like to feel better. I feel
like I?m dragging myself to work each day .

[markt]

I noticed a huge difference with Rituximab after about 7-8 weeks from my first infusion... it's like color was slowly coming back into my life.  Didn't do everything for me I hoped it would, but made life way better for sure.  Oral dryness was definitely improved.

[Sharon]

After about a month of weekly sc injections I noticed my severe joint pain was much improved
on Orencia. By about 3 months time it proved to be a game changer in many respects.
The longer I'm on it the more improvements I notice. 

[Tharrell]

Same here, after the fourth weekly injection, a defenitive overal improvement in joints and moisture production. Both medication work on a different pathway, so I guess it would be the one your doctor thinks is active and making you sick. That is why I want to switch, to see if a different pathway has become more active and that's why the orencia is not working as well for me. Honestly, at this point I really don't know why my rheumatologist is making such a big fuss.

[Gigi]

Does it affect your liver in a bad way ? My enzymes are high. Could it help in that area ?
I appreciate everyone?s input. 

[Tharrell]

From what I understand, orencia does not directly affect your liver unless you have an undiagnosed liver disease. I think liver problems are more likely with orencia infusion. However, as always, talk to your doctor about any concerns you may have.
I have had several instances of elevated liver numbers while on orencia, but they were due to tegretol, dilantin and ioniazid, never when on orencia alone.

[Sharon]

Tharrell- your rheumy's "fuss" may be do to dealing with your insurance again.
Gigi- I haven't had any issues while on it.  As far as helping with high enzymes, it's not on label for that symptom
but you never know what it will help with since it affects T cells which govern over many immune functions.
It has helped me with gastro issues which always surprises doctors.