How can we be sure that benepali is working?

[RApatient2020]

Hi all,

I’m writing on behalf of my mum who was diagnosed about 25 years ago. She failed methotrexate therapy so started enbrel and she was doing really, really well until she was switched to benepali 4 years ago.

Since then she has suffered from constant fatigue and joint aches and her fingers are becoming more deformed. Her bloods have been normal so her concerns are always dismissed.

We feel that we are not being listened to. If benepali is working, then why is she so tired (all other bloods to identify other causes I’ve been normal) and why are her finger joints swollen, tender and deforming? Can your finger joints continue to deform while on benepali? Surely it should make the disease quiescent?

[RApatient2020]

Furthermore, she only get relief for a max of two days before it wears off. Is this normal?

[Soundofmusic52 in reply to RApatient2020]

I was put on benepali about 8 months now I am fine no pain but middle finger swollen and thumb and few fingers bending my rheumatoid nurse doesn’t seem to concerned as long as I have no pain we are all different hope your mum gets some answers keep pestering them till you do good luck stay safe 😷x

[Brushwork]

The medication is not working when there is clear joint swelling or significant pain.

Sometimes, one needs to be insistent when talking to specialists as some seem to want to ignore symptoms when they are questioned. The rheumatologists aim should be to control the disease to avoid damage to joints and organs.

Fatigue sometimes happens even with meds, but should not be significant.

[Hidden]

I’m entanercept since January my stiffness has improved but I’m still have problems with mobility. Achy joints and muscles, burning pins and needles and numbness in jointsa d fatigue. I wrote a lengthy email to my nurse.felt I could get everything down without being interrupted then forgetting what I was saying. I got response although medication working in one way it was causing problems elsewhere so it Doesn’t suit me. So am changing

[ruth_p]

I would say it isn’t working well enough. She shouldn’t be continuing to get swollen and deformed joints. You need to push the rheumatology department about it, in the past I was dismissed a couple of times by the less experienced rheumatology registrars and I finally had an ultrasound which showed synovitis in my fingers and elbows so I got a steroid injection and an increase in mtx. As J1707 says send an email or write it all down so they have to read it. Good luck

[Lolabridge]

Benepali did not work sufficiently well for me so my consultant took me off it and put me on a different drug which works much better.

It would seem it’s not working well enough for your mum and she needs to see/speak to her consultant about the problem.

[helixhelix]

Agree with others, this isn’t working. I have normal bloods now, but my consultant looks at my joints not the piece of paper. And she checks under ultrasound.

Push, nag, pester to get a proper medicines review.

[Fruitandnutcase]

Can I add that it would be worth taking photos of your mum’s swollen joints. That would give you a record of the changes as well as evidence you can send off to the rheumatology staff who are not taking you seriously. I agree though, I think you have to persist and that’s tough when the people who should be able to help you aren’t doing that. Good luck with it all.

[marti]

I would definitely be speaking to her doctors i have been fighting to stay on enbrel after they said I would be switching to benepali. I have heard good and bad about results so if your mum is struggling perhaps they will switch her back

[JulezH]

I had the same happen to me, after about a year I started to ask for steroids so they took my pain seriously and switched me to rituximab. I hope your mum gets some relief soon.

[Summerrain14]

So sorry to hear about your mum’s pain and swelling in her joints. If you could take some photos and have a way of emailing these over to your mum’s rheumatology team this should help with getting some further advice and it sounds like some changes do need to be made to your mum’s medication. Do let us know how your mum gets on won’t you. x

[Nyreedw]

Many people are finding when changed from original to a biosimilar it does not work as well. Biosimilars are not generic they are molecularly different. Under NICE guidelines you could have refused to change,I did and was left on Humira and it turns out all the ones who changed to Imraldi,at our clinic, have all gone back on original. Changing has to be a joint decision between patient and consultant not a forced change x

[Knit12]

I was on Benepali and it didn’t work for me. Rheumatologist took me off it. I think your mum needs to speak to her rheumatologist about it.

[Chrissycl]

I was also swapped from enbrel to benipali and it certainly didn't work for me, more swelling, more aches and more fatique. I was then put on baricitinib a tablet and mostly been fine since.

[193639]

Hi there, sorry to hear your Mum is in pain. I also switched from enbrel to benapali and deteriorated very quickly. They say it is the same but a less expensive brand. I gave benapali a go, however my rheumatologist put me back on enbrel and I feel so much better.

Please request that your Mum returns to enbrel. The fact that her fingers are deforming suggests that she is sero positive which means her blood is corrosive. Another reason she should be considered for the most effective treatment.

Good luck