Orencia : Hi, I have been on Orencia for 7 months. It... - NRAS

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Orencia

jobredin profile image
5 Replies

Hi,

I have been on Orencia for 7 months. It has been working for me, although very slowly and I am now at a point where I still have a few swollen joints that it’s not quite controlling but it’s bearable. I have, however, been prescribed Rinvox to go onto next (but I’m hesitant due to box warnings). I am wondering if anyone can give me any advice about taking Orencia and stopping it to move to another drug and then returning to Orencia again if the alternative fails? I wondered how long it might take to work if you revisit the drug (Orencia) in the future given that it takes so long to work!

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Fra22-57 profile image
Fra22-57

I think I had to wait 8 was befor trying another biologic.My first one was working Inthought but nurse who assessed said no as I still had some pain in hands.I am now on my 4th biologic.blood results say ok but still always have some pain..wish they had left me on the first really.Also my rheumatologist told me I couldn’t try one again but maybe that is untrue

jobredin profile image
jobredin in reply toFra22-57

Thank you 🙏

It can be very different for different people so there's no way of saying for sure if you change and go back that the previous biologic will work as well as it did first time around as your body will have developed an immune response to the medications. A good deal of the prescribing pathways is down to local procurement arrangements and we along with the British Society for Rheumatology are gathering evidence across the UK to establish the variance. So as others have said here it may or may not be possible to go back onto Orencia if Rinvox doesn't bring your RA under control but this is worth a full and frank discussion with your rheumatology consultant or specialist nurse so you can make a fully informed decision with them. Good luck and I truly hope things work out for you.

I stopped my last biologic to start abatacept two weeks ago. My rheumy isn't kean on going back to ones that we have already tried. I'm interested in why you feel it has worked when you still have swollen joints. I've tried 5 biologics previously and some of them helped but I wasn't right. Mt now retired rheumy said if I couldn't get off steroids on them they weren't doing their job.

Rinvoq is a tablet so easy to take but it just did nothing for me. Hope it works for you.

jobredin profile image
jobredin

Hi, so I would say it has worked, because when I started taking it in March I was unable to get up off the sofa and do basic tasks and over the time I have very gradually managed to get more of myself back. I had an extremely swollen knee, and that has very slowly reduced, however there is still a bit of swelling left even after steroid injection. I have pain in my wrists that I can’t seem to shake off. Bloods show my inflammation levels have returned to normal as well. Over the space of 7 months, my body overall has benefited from being on it but as you say, I’m not quite right. However, maybe this is the new norm and I never will be completely pain free. I was previously on Adalimumab which was amazing but ended up with reoccurring pneumonia. It’s hard to know where to set your expectation levels! I hope you get on well with Abatacept.

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