Cost of tocilizumab (2)

[Duncoding]

Thank you to everyone who responded to my first post a couple of months ago, regarding an extension to TCZ.

An update for you…..

As suggested by Lemonzest I’ve exchanged a few emails with Roche UK, and here’s their response:

“I have discussed your query with our Medical Affairs team and they have confirmed that unfortunately funding extensions are no longer available in the UK for RoActemra. We can only recommend that you discuss this further with your doctor as they are best placed to provide advice on how to access and obtain funding for medicines in the UK.”

So that’s that.

As regards the possibility of additional funding from my local NHS Trust, although my consultant has lobbied hard for this, the Trust has now formally refused. That’s unsurprising, but nonetheless disappointing.

So, my next step is to explore the possibility of moving to sarilumab, another IL-6 inhibitor, but that’s unlikely as I don’t think it’s been licensed for GCA yet. Unless anyone knows any different?

After that, the only possibility left is to see if I can get an extension via a private rheumy and pay for it privately.

Will keep you updated……

[DorsetLady PMRGCAuk volunteer]

Oh dear- but worth asking….good luck with whatever is next for you.

[Ambientman]

I'm in London and can't get tocilimzumab,can't spell it.🤣,but apparently other areas u can..I'm stuck on 12mg pred whatever I try I can't reduce

[PMRpro Ambassador in reply to Ambientman]

Yes - but what diagnosis do you have and how was it made?

[DeepThought2]

Dear Duncoding, that is really bad news - in the EU a first biosimiliar of Tocilizumab is available (TYENNE from Fresenius Kabi). It is (at least in Germany where I live) at present only moderately cheaper than Actemra (400 € less for 4 injections). I have no idea if it is approved in UK - but if so it might be worth to contact the manufacturer as you did for Roche. I generally think that biosimilars will lead to decreased prices - but we will have to see how long this takes.

[Duncoding in reply to DeepThought2]

thank you, that's interesting. i've never heard of Tyenne and will ask my consultant about it.

[Kafkaontheshore]

I am on Sarilumab in the UK. My rheumatologist at the Hammersmith Hospital (Imperial) prescribes it and it is funded directly from them. I had my year of Tox and then had several flares and a couple of small strokes. Hence Sarilumab.

[WaltzG]

All very worrying ....I am about to come off tocilizumab after a year in the UK as an alternative to steriods.....consultant says in remission anyway altho I am not convinced.....I am relying on being able to get again if flare!! I have GCA and PMR. Anyway I wish you luck with it

[Teekay2]

I was put on Tocilizumab for temporal arteritis in 2019. I was already on Etanercept for rheumatoid arthritis which was stopped and I was told that Tocilizumab would cover both conditions. My Tocilizumab was stopped and my rheumatologist then put me on it for my rheumatoid arthritis and with a yearly review I am still on it. I am in London.

[PMRpro Ambassador in reply to Teekay2]

That is probably the only way to get it - it working for the RA, You are lucky it works for your RA - not all RA is caused by IL-6.

[Duncoding in reply to Teekay2]

Mm, yes, my consultant is sympathetic and, knowing that TCZ is prescribed long term for RA, he looked for signs of RA but no luck!

[Rugger in reply to Duncoding]

Mine did that too! I wondered why she was so keen to do an X-ray of my hips several years after diagnosis of my GCA!