Actemra biosimilars - any experience?: Hello... - PMRGCAuk

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Actemra biosimilars - any experience?

Optim11 profile image
6 Replies

Hello everyone, I have a different insurance provider for 2025 and their first order of business was to flag big-ticket treatments. Of course Actemra made it onto their list. They've agreed to cover its FDA-approved biosimilar, called Tyenne. As a GCA/ PMR sufferer currently stable (on weekly Actemra injections and 2mg pred) I am loathe to change anything. A bit of research was reassuring though, as the suggested replacement had to prove a 'nearly identical' efficacy and safety through US clinical trials. It's the 'nearly' that concerns me.

Any anecdotal experience to share? Thank you as always for any thoughts.

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Optim11
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PMRpro profile image
PMRproAmbassador

I think someone has mentioned Tyenne so you may get an answer. I think it is being used in the UK.

Devoid profile image
Devoid

Hi I’m in the Uk and have moved over to Tyenne , no differences noted from actemera, I’ve been on it since the autumn

PMRpro profile image
PMRproAmbassador in reply toDevoid

Knew there was someone!!!!

gardenning profile image
gardenning in reply toDevoid

Hi, I'm also in the UK and have been struggling with PMR and GCA for five and a half years. Other steroid reducing drugs haven't worked for me. I've heard of Actemera and have discussed it with my rheumy who has said it's not appropriate for me, can you tell me how you got offered it and have moved to the be drug Tyenne. Many thanks

PMRpro profile image
PMRproAmbassador in reply togardenning

Did you aks WHY they considered it not appropriate? What pred dose are you on?

Devoid profile image
Devoid in reply togardenning

Hi I was diagnosed with LVV in 2019 . Went through steroids and methotrexate, later leflunomide , whilst steroids reduced the inflammation initially it was never controlled until I went on Actemera late in 2019 . Then I was on it longer than the 12 months you usually get in uk due to the pandemic. Got off steroid’s and everything else and felt well. The consultant at the time in his wisdom took me off Actemera with no monitoring of the condition. I was unwell again in less than 3 months, another course of steroids and sparers before he very reluctantly agreed to a ct pet scan which showed inflammation in most main vessels. Since then a change of consultant and have been on Actemera and now Tyenne for some time. As pro says you could do with knowing why the consultant doesn’t feel it’s suitable, maybe due to other health issues

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