Benepali

thoulds

Hi all,

I’ve had RA in my ankles, wrists and knuckles since I was 15/16 (2015) at which point I was put on methotrexate and Adalimumab and had several steroid injections over the course of a few years, and came off methotrexate in 2019 as it was all under control. It was completely managed until I moved hospital when moving to London. I didn’t get my Adalimumab for 3 months at the start of 2022 during the transition and it flared up to the worst it had ever been. By the end of 2023 my Adalimumab had stopped working (I was creating antibodies) and I started to developed arthritis in my left below. I was given various courses of steroid between the summer of 2023 and spring 2024 and I was finally changed to Benepali in May. The Benepali was working really well, however I had a follow-up appointment with my consultant last week which was fine and seemingly the day after I noticed my elbow feeling a bit warmer/clicky/crunchy. I took my next dose which helped but I am unsure if I’m now in my head about this given the chaos of the last few years.

I am unsure what to do, is it worth sticking it out a bit to see if this is just a temporary flare? Would it be worth chasing for steroid injections or going back on methotrexate with the Benepali this time? Can you become immune to Benepali also?

jamieA

Hi @thoulds

I can't answer your question on benepali. I've psoriatic arthritis and enthesitis and have been on adalimumab for 3 years now. A couple of times my rheumatologist has thought I might be building antibodies to adalimumab as I've had joint and tendon pain. She has then done all the tests but they've come back as negative each time so she's put it down to a flare. Each time she's then given me a general Kenalog steroid injection in my rear to calm things down - which it has.

noddingtonpete

Hello @thoulds and welocme to the Community. We are a friendly and supportive group and I hope that will be your experience as well.

I have put a link in below on etanercept which is the generic drug, benepali is one of the names it is prescribed under. I hope this answers some of your questions.

https://versusarthritis.org/about-arthritis/treatments/drugs/etanercept/

If you have any specific questions then go back to your consultant or GP who may be able to help. In the meantime if you have any further questions please post them and we will try to help.

Best wishes

Peter

Tracytiggs

Hi @thoulds

I hope your pain has eased.

I'm on Benepali as well and it has helped a lot though I fear it has come to the end of the ride together as I'm getting a lot of breakthrough issues.

Like you I did leave it a while before I contacted my rheumatologist. I just hoped I was having flares and they'd settle. Unfortunately they were here to stay so just waiting to see which meds they'll introduce this time.

I guess my take away from this is, you know your body, what's normal for you and what isn't. If your suffering, don't do it silently, get help and support.