Availability of Tocilizumab [TCZ] on NHS

[GCA-TCZ]

The original NICE gidance on Tocilizumab , TA518, was to be reviewed in 2021. Has that review taken place?

Have there been any indications that the 1 year max treatment with TCZ on the NHS will be extended?

[PMRpro Ambassador]

It was extended during Covid but that extension is about to come to an end for the first people to benefit. I haven't heard anything about any reconsideration yet - but then, no doubt NICE has been busy ...

MrsNails is the one who keeps her ear to the ground about this sort!

[DorsetLady PMRGCAuk volunteer]

According to latest I can find - see first link dated July 2021, wef April 2022 the rules will revert to original guidance as you quoted - second link -

england.nhs.uk/coronavirus/...

nice.org.uk/guidance/ta518

[GCA-TCZ in reply to DorsetLady]

Many thanks for that. The problem is that if you have already completed 12 months with TCZ and GCA returns after, say, the next 6 months, the 2018 NICE doc. precludes getting it again from NHS. And it is expensive to buy privately! But thanks again for your input

[DorsetLady PMRGCAuk volunteer in reply to GCA-TCZ]

I think there may be a possibility that your Rheumy can request an extension in certain circumstances- but don’t quote me on that. ..and certainly don’t hold your breath. Very frustrating to find something that works-and then have it taken away…

[Sophiestree]

My 12 months was up in January. When I saw the registrar on New Year's Eve he told me that it had been extended a further 12 months so I waited to see what happened. Sure enough I have an additional 12 months which has just started. I didn't ask if that was across the board actually but was pleased to see it happened.

[GCA-TCZ in reply to Sophiestree]

Thanks for that - most interesting. This is for GCA? There is an extension for those on TCZ at the begining of the year till April 2022 [nice.org.uk/guidance/ta518] but not beyond. For those who completed their 12 months long ago and then had a flare-up TCZ is not available on NHS - so we have found. So I wish you well - hope you become free from GCA!

[Sophiestree in reply to GCA-TCZ]

Yes GCA/LVVI was surprised but he was very confident and it seems to have happened.

[Sophiestree]

Originally it was two months but when availability became harder it was one month and has continued like that. I have always received it and they may sure you have at least two in the fridge at the time of delivery so it's been OK for me.

So you are going to be back on TCZ? I do know what you mean, it must feel odd having such precious commodities in abundance.

Do you find it hasn't worked as well then?

I've only known friends who have had Humira for other conditions so wasn't aware until you talked about it, that it would suit.

I know this will be it though as normally it is only given for 12 months, so I'm hopeful this additional 12 months will really help me.