Tocilizumab

[Niblick]

Have there been any developments in last 6 months in petitioning NICE to extend use of Tocilizumab or generic? I tried a petition for extended use with MP and Rheumys help but it was rejected

Im in my second year of Toc. Paying NHS £1030 per month (who said healthcare is free at point of delivery!!). The big advantage is Im off the Prednisolone so my blood sugars are way down . NICE are apparently quite happy for long term of Pred use to give users Diabetes

My inflammatory markers are down to normal levels. Could I experiment extending injections from 7 to 10 day cycles?

[PMRpro Ambassador]

I inject every 14 days - I can't get under 7mg pred anyway so now I am experimenting with a longer interval on the grounds of the less the better. In all the trials they did have an arm with biweekly injections and the difference wasn't enormous.

I don't see TCZ becoming available for PMR to be honest. Someone who has been involved in the process said the other day that nothing has changed when I asked her after someone said on the forum THEY are getting in in the New Year. We rather assume the rheumy has fudged the prescription. It is available without restriction for inflammatory arthritis which I think is rather unfair.

[powerwalk in reply to PMRpro]

Yes, i still begrudgingly think of someone i know who got it and was only a few months on very low dose pred. Sorry, shouldnt begrudge!!! She's flying around now, im still battlin after over 8 years.

[PMRpro Ambassador in reply to powerwalk]

I do trust that the UK would at least consider letting me have it - after 16 years on pred my cumulative pred is dose is astronomical! Probably well north of 40g where Dasgupta reckons over 10g is far too much. No apparent disastrous problems as yet.

[powerwalk in reply to PMRpro]

Well in fairness you've had a long battle and it does seem to have been very good for you. This person had a friend, a doctor in one of the hospitals here, i definitely think it was wangled some way. No other way it would be given to someone under 5mg pred. Anyway, on we plod!!!

[PMRpro Ambassador in reply to powerwalk]

If I were under 5mg pred nothing would have induced me to use it. Biologics are NOT sweeties.

[Devoid]

Hi I have been on Toc for longer, firstly with the pandemic and then now because my consultant doesn’t feel he can keep me well without it . Have changed to one of the bio similar earlier this year and now injecting every 9 days which has been okay for the last 6 months.

[Rugger]

Your inflammatory markers will be down to normal levels because that is the effect of TCZ. It doesn't necessarily mean that the disease is inactive.

Have a look at LemonZest11's posts.

My Rheumatologist told me that nothing has changed with the biosimilars becoming available - still the one-year ration for those of us with GCA & LVV. As PMRpro says "unfair" when it is available to others.

[sequeluk]

Curious as to how you managed to get to pay for it on the NHS. When mine was stopped I asked if I could continue and pay for it but was told it wasn’t an option.

[Niblick in reply to sequeluk]

It took some sorting , but any Doctor can give a private prescription and these can be dispensed at NHS Pharmacies (and paid for accordingly). However because its unusual , you need to set this up with the Pharmacist, as the counter staff are generally unaware of the process

[LemonZest11]

I was on 3 weekly TCZ which enabled me to taper off pred and remain pred-free for over 12 months. When we began the TCZ taper, my bloods indicated relapsed LVV after several 4 weekly injections. Who know when I began to relapse? TCZ masks blood results until you space it out sufficiently, ie 4 weekly. But I took it 3 weekly for over 3 years with great success.