GCA and tocilizumab withdrawal

[christine2715]

Has anyone given up taking tocilizumab (Actemra) and remained in remission or did you get GCA back. Is there a program to reduce injections in stages?

[Woodiesmum]

I was allowed it but then told because I was only allowed it for one year it was pointless as they needed a lot longer to make sure it worked x my rheumy fought so hard for me too and we were both disappointed x

[christine2715 in reply to Woodiesmum]

I have been taking it for over a year on the NHS - on trial - and it makes a huge difference - surely a year of feeling much better is well worth it. I am now on fortnightly injection does, started off weekly

[Woodiesmum in reply to christine2715]

They won’t let me xx because I was left in diagnosied for years and I mean years I am now called complex x normally it would start working but mine is so engrained x

I am not happy by any means x but I will ask again about it x my doc even went to America to the people who bake this drug so he is doing his best for me xx

[PMRpro Ambassador in reply to christine2715]

Um - it does cost the NHS £12,000 a year. Yours didn't cost that - the company paid for it for the clinical trial.

[DorsetLady PMRGCAuk volunteer]

Hi,

Don’t think you’ll get many answers from UK, Actemra has only recently been approved for use here, so no-one likely to be in that position.

[Nap1]

I started this drug year ago and it helps quite a bit. I started with weekly injections and then went to every other week. I stopped it for a short time and my blood markers went up. So I went back on. I am now stopping it again and Will look at only the ESR. I need a knee replacement and would like to be off the drug completely. It is difficult to say how much it is done with pain because my pain is more from severe arthritis, I think. So we are testing the waters again and hoping the blood markers stay within reason. Unfortunately I had to go up on the prednisones because of my adrenals. It is all trial and error. It is easier for me because I am in the USA. Good luck to you.

[enan-illuc]

Hi Christine2715,

I have been taking Actemra/Tocilizumab for over a year and I feel it is very effective. I have not heard of a program to reduce the Actemra in stages. I have an injection every two weeks and it has allowed me to reduce my Prednisone at a more rapid pace, but it is not a substitute for Prednisone. I hope this helps.

Enan

[PMRpro Ambassador]

They do not yet know what the long term results are because the follow-up to the trial is still going on. They have found some patients remain in remission for at least some months - but how long is still being investigated. At a guess there won't be a fixed answer - some will be in remission for some months, others for longer.

[christine2715]

Many thanks to all who have answered my post - I guess only time will tell.