Tyenne /Tocilizumab: Hi just to say I be just... - PMRGCAuk

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Tyenne /Tocilizumab

Devoid profile image
16 Replies

Hi just to say I be just received a letter to say I’m changing from actemra to this brand. Hopefully a lower price will make it an option for more people.

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Devoid
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16 Replies
SheffieldJane profile image
SheffieldJane

Yes, that would be good.

PMRpro profile image
PMRproAmbassador

There are now 3 tocilizumab biosimilars on the market and approved. Can't find any indication of prices though.

At the beginning of last year there were 7 biosimilar alternatives to Humira which had been a similar price to Actemra. The first was launched about 6 years ago. My rheumy told me soon after that the price of Humira had fallen to 600 euros a year! AbbVie had attempted to develop a PMR drug using Humira with an add-on (to extend the patent I suspect) but it scored a resounding fail as the pred side effects were WORSE and the clinical trial was abandoned.

If I can have a drug that works for 600 euros a year - I'd happily pay for that myself!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Prices? - nor me on usual NHS site.

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

One article said the price wouldn't be released until just before launch. Obviously if has been - if it has been offered to patients!!!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Sure most would as well….

nallufl24 profile image
nallufl24

I find this very interesting. I looked up Tyene on the internet since I’ve never heard of it before. It was approved by our (US) FDA on Marc 7, 2024. I couldn’t find anything about price or side effects. I don’t know where Devoid is from but I don’t believe it is being used here yet. Please let us know how it works for you.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to nallufl24

Devoid is in UK…..

nallufl24 profile image
nallufl24 in reply to DorsetLady

Thank you. I’m still very interested

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to nallufl24

Sure Devoid will let everyone know how things go… it’s not yet listed on the NHS drugs tariff which is a bit odd considering letters are going out to patients saying it will be prescribed.. there is other paperwork relating to it though…

Devoid profile image
Devoid in reply to nallufl24

Hi I’m in the uk, the letter to inform me of the change has come from the hospital pharmacist, by what I can gather it should be the same as the Ro actemera that I’ve been on for a number of years on and off

PMRpro profile image
PMRproAmbassador in reply to Devoid

It should be very similar - but all biosimilars have subtle differences.

Frewen1 profile image
Frewen1 in reply to PMRpro

I’ve been put on leflunomide after a flare and was turned down ( obv) for a 2nd year of Tocilizumab… should I be asking to discuss one of those “biosimilars” ? Not heard of them before…

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Frewen1

As they are "biosimilar" I'm guessing [could be wrong, hope I am] that NHS/NICE will apply the same criteria they do to TCZ - i.e. only trialled for a year in GCA, so only prescribed for that period ... even if the costs area lot less...

Frewen1 profile image
Frewen1 in reply to DorsetLady

Ok thanks

PMRpro profile image
PMRproAmbassador in reply to Frewen1

No idea - this is all new to us too.

Rugger profile image
Rugger

Thank you for alerting us to this. I'll have to hear what my Rheumatologist has to say! 🤞

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