Is Benepali effective?

[Taddylady]

I have been on Benepali for 6 months now and haven't noticed any effects at all. How do they check it is working?

[PinkLamb]

Hi,

I have had RA for about 15 years,

& been on benepali three years in Oct/Nov this year, prior to that I was on Enbrel, quite happy, then they made the switch to Benepali. I have been quite unwell since last November, numerous flares, excruciating pain stiffness and swelling, mobility problems etc, I am due to have some tests done once the steroid tablets are completely out of my system,to find out what is happening?? I previously discussed this with my consultant, I think that if you have any concerns that should have a chat with nurse/gp/consultant.

All the very best x

[Hidden]

What did your rheumy say when you told them you feel there’s been no improvement? When I was put on it 6 months ago I was told it would be stopped if there was no improvement at my 3 and 6 month check ups. It’s expensice and they said they wouldn’t keep someone on if there is no benefit.

[helixhelix]

Are you having blood tests to monitor you? That will show if there's any decrease in inflammation. And then it's also used along with physical exam to calculate your disease activity score, which should also show changes.

[Simba1992]

Have understood that it should start working within 3m. If not should be changed. I think you really need to push your rheumy for more information.

[Taddylady]

The trouble is I didn't have any inflammation when I started and have only had a little inflammation since so is this due to Benepali or would it have happened anyway. I had inflammation for a year before starting but was in remission for a month before starting. I know there is a test to see if Benepail is working but when I asked my rheumy she said 'we don't do that'.

[Simba1992]

Why did you start a biologic if you had no i flammation?

[Taddylady]

I had a lot of inflammation from June 2017 until July 2018 and was on methotrexate for 6 months Nov 2017-Apr 2018 (I had to wait to see a consultant) but this didn't work and gave me nausea, then I was put on Leflunomide and this gave me diarrhoea and I lost loads of weight. Even though I was in remission after that the rheumy said it would probably return without treatment so that's when I started Benepali.

[Mmrr]

Can I ask how you are doing now?

I've recently started benepali and seem to be developing problems after an initial slow but encouraging start.

[Taddylady in reply to Mmrr]

I am pretty sure that Benepali is having no effect but I can't be sure. If I miss an injection I don't notice any difference, even 2 weeks without one. My sister is on Infliximab infusion and she notices a difference straight away. I have still got inflammation although it's not as bad as it was last year but is that due to the Benepali, I don't know.

[Hidden in reply to Taddylady]

I was off benepali for a while at Christmas and it wasn’t until after 3 weeks off that I started to notice symptoms coming back. I’m surprised you were put on it with no inflammation as I had to get really bad before they put me on it. Different hospitals, different approach I suppose 🙁