Tocilizumab (Actemra) withdrawn - update

[christine2715]

Hello all who responded to my last post about the above. I have now been told I can have three more months supply but they cannot tell me if they will continue after that. Feel relieved to have three months!

[Hidden]

Well that's a good start. You can at least plan a strategy now. 🌻

[Chrisellie]

Well done, hope you get enough to be able to come off it altogether. Do you know how they judge you are ready to come off it. It’s a question I haven’t asked yet.

[christine2715 in reply to Chrisellie]

The NHS have only agreed for patients to have it for a year as it costs 10k per year. That is there only criteria for trying to wean patients off it.

[Chrisellie in reply to christine2715]

Thanks. I am on this also, but only 6 months so far also on the trial on Scotland. Do you know how they decide when one is ready to top the injections?

[Jackoh]

Yes at least you have 3 months grace. Still must be worrying for folk just starting it whether 1 year will be enough time. I personally think if it’s approved it should be approved with no time limits ( I know this wasn’t agreed by NICE) But unsatisfactory I think.

[enan-illuc]

That is good news Christine2715. Hopefully it will be approved and you will have no problems getting it.

[Christophene]

Why was it withdrawn? It must have provided relief if you are relieved to have a 3 month supply.

[Chrisellie in reply to Christophene]

Prob. Cost. Very expensive.

[christine2715 in reply to Christophene]

The NHS said people could only have it for a year because of the cost. I was on the trial and have been allowed to continue for over two years but I had been assured I would continue as long as I needed it. It costs £10K per year but of course once you are down to only one injection per 4 weeks as I was then the cost is only a quarter of the cost - ie £2.5K

I would have thought other medicines had a similar cost. Also why are people with rheumatoid arthritis allowed to have these injections for many years. I just dont understand why they should have priority.

[PMRpro Ambassador in reply to christine2715]

I think that is discrimination too. I still haven't been able to find out if RA patients get biologics for unlimited time or whether they are used to induce remission and then stopped.

[Hidden in reply to PMRpro]

It is until remission or control but then drs and patients decide on how long treatment goes on. It took a while but NICE interactive flowchart for RA finally coughed it up. I believe it's a similar strategy to GCA in the sense that the initial phase was provided at cut rate by manufacturer. As you know I don't have computer so I think I interpreted it correctly.

"People currently receiving tocilizumab for the treatment of rheumatoid arthritis who do not meet the criteria for treatment should have the option to continue treatment until they and their clinicians consider it appropriate to stop."

pathways.nice.org.uk/pathwa...