Sarilumab/Kevzera

[3LittleBirds2]

Hi

Hope everyone is doing ok, I've not posted for ages but still check in from time to time.

After having some quite severe infections and having been on Rituxumab for about 7 years, my Consultant has finally decided to take me off it, due to it not working as well for me.

I will be starting Sarilumab in the near future, I have searched for posts regarding this drug, but I would be interested to hear from anyone who had experience of it, the injecting doesn't worry me as I've done it before with Embrel.

Many Thanks

[helixhelix]

I was on Toci for 6 months - sibling drug also IL-6. Nothing negative to say about it, but equally not anything positive as it didn’t work. My rheumy was convinced it would!

Hopefully you will have better luck.

[3LittleBirds2 in reply to helixhelix]

Thank you!

[DenMum]

Hi.I've been on fortnightly Sarilumab since March 2022. It worked really well for the first 6 months and then I started getting increasing flares, usually connected to an infection. My Rheumatologist thinks I have developed antibodies to the Sarilumab (I was getting an itchy patch at the injection site) so in April this year he added Leflunomide. The two in combination seem to be working really well except that my neutrophils have gone really low so I am taking a 2 week break to see if that helps. I hope it does cos my joints have been the best for over two years. I hope it works for you.

All good wishes .

[3LittleBirds2 in reply to DenMum]

I really hope you can restart it again ..Thank you for your reply!

[Titch55]

I have been on Sarilumab for 5 years and it has worked really well. I had a lot of infections in the first six months so they reduced the dose. Since then I have been fine and it is still working well. I also take Methotrexate 25mg by injection.

[3LittleBirds2 in reply to Titch55]

This is positive, Thank you for your reply.

[SheilaT3271]

I started Kevzara just three weeks ago after switching from Amgevita and feels like it’s working well so far with no pain and better energy levels. Fingers crossed this continues and it doesn’t affect my white blood cell count.

[3LittleBirds2 in reply to SheilaT3271]

Thank you for your reply!! I hope it doesn't lower your white cell count. , it's frustrating isn't it , when we find something that works but then have to come off it for side effects. Best wishes and thank you for replying.

[ColinRR]

I’ve been on Kevsara for about 2 years and it is the only drug that has worked for me. I’m also on 20mg Methotrexate (tablets) which alone just didn’t work even when supplemented by Hydroxychloroquine and later injections of Adalimumab, which for me had no effect on my RA.

I really hope it works for you, Colin

[3LittleBirds2 in reply to ColinRR]

Thank you for your reply...I hope it continues to work for you too!