What next after sarilumab?

[tazman3]

Tocilizumab was a miserable failure and resulted in me having to take statins. I am about to start sarilumab and as this is a IL-6 med (whatever that means) I am worried that if I get the same side effects I will need to stop that too. Is there a medication that is routinely given after trying sarilumab?

I am really trying to be positive that it will work, but the little voice is whispering to me that the bloods will be unacceptable and I will have to stop again. I have been without any RA treatment for 3 months now and I can feel the inflammation racing around my body. Each day I get a new pain somewhere and the only thing that takes the edge off is ibuprofen but I am worried about the long term effects.

I don't want to be on/off with meds anymore. I have been trying all the usual ones since being diagnosed 3 years ago. It's beginning to get me down.

Any advice would be much appreciated.

[helixhelix]

There are still others to try still on the list - B cell inhibitors, JAK inhibitors and costimulation moderators. So don’t despair and fingers crossed that this one wil work anyway.

I started Toci on Saturday after last two failed, so hoping it’s the one for me.

[tazman3 in reply to helixhelix]

Good luck and I hope it works for you. I did actually start to feel a little better when I was on Toci, but the blood results were just not acceptable and I spent months off it then trying again. The circle just went around and I was off it more than on it! Fingers crossed.

[oldtimer2]

My sister is doing really well on sarilumimab after being on several other biologics which either were ineffective or caused problems.

Don't over think the situation! You may be absolutely fine on it - but there are lots of others to try. It's just a nuisance that the research just hasn't got to the stage of being able to pinpoint which bit(s) of our immune system is playing up. But when you look at the how the immune system works, it isn't surprising - it is immensely complicated!

And look at the treatment pages on the NRAS website: nras.org.uk/information-sup...

[tazman3 in reply to oldtimer2]

Thanks oldtimer, that's given me a good amount of optimism. Knowing that your sister's story is similar to mine really helps. I only know people with RA who have had success almost immediately with mtx, hydroxy and sulfasalazine. They just made me feel awful and had no effect. I do believe in mind over matter and try really hard to be positive.

I had an aunt with RA who took her own life because of this awful disease, but that was decades ago before effective treatments were available. She was not a blood relative, but she was so lovely and I often think of her struggles when I am moaning about all these drugs we now have that give hope to many.

[Twitty999]

Rituximab infusions & Methotrexate injection have got me completely pain free, never needed a pain killer in over a year now 😊

[tazman3 in reply to Twitty999]

You are very lucky. I took MTX for a long time, but it did nothing for my RA. I didn't like taking it and felt better when I stopped. I had infusions with the Tocilizumab. Hopefully, sarilumab will work although I am still waiting for it to be delivered!

[Twitty999]

Yes, I feel very lucky to have found the right meds as it is all trial and error finding the right combination 🤷🏼‍♀️ Good luck with the Sarilumab 🤞🏼🤞🏼🤞🏼🤞🏼🤞🏼