Cimbia or Orencia? Need help deciding: Got some... - LUPUS UK

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Cimbia or Orencia? Need help deciding

katidid profile image
3 Replies

Got some disappointing news today - a third round of liver tests shows that my body is rejecting MTX. My doctor is recommending Cimzia or Orencia as the next course of treatment, as I also have psoriatic arthritis. I am SUPER nervous about this. Last year i did three TNF inhibitors and the last one, Remicade, sent my lupus into such a downward spiral I was in bed for most of 4 months. I honestly didn’t think I was going to make it.

Has anyone tried Cimzia (or Orencia)? We’re trying to get my joint pain and muscle pain under control and reduce the early stages of spondylitis. But as always, we’re fighting the skin, organ and fatigue of the Lupus… Another complication is that my Lupus has effected my CNS (brain inflammation) and TNF inhibitor can cause seizures.

Any advice appreciated or a virtual hug. So hard to go from optimistic to frightened :(

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katidid
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3 Replies

I'm giving you the virtual ((())) because I've never tried an anti-TNF so can't advise on the basis of experience.

But, having previously been misdiagnosed with RA, I know plenty of people who do take these 2 medicines from the NRAS HU community. So it would be worth asking there perhaps as lots of members have spondyloarthritis Although every person is different in what drugs they can tolerate or can't of course. Xx

Puffwheat18 profile image
Puffwheat18

Hi there, sorry to hear about your illness but I myself live with lupus and tell me about it, it's a really weird disease and at times it's hard to cope with but I would like to tell you that I'm on orencia myself for the last 8 months and it's really helping with my joints. I'm encouraging you to try it.

katidid profile image
katidid in reply to Puffwheat18

Thanks for the advice! i talked with my rheumy and we decided on Orencia as it has the lowest potential to aggregate the other symptoms of lupus. he mentioned that the drug co has even started trials to get it approved for lupus. MTX stopped now and can def feel my body reacting, so really looking forward to getting something for these burning joints and the muscle swelling.

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