Tocilizumab - end of the year's treatment

[Frewen1]

I just thought I'd pass this on - I saw my consultant last week, just as I was coming to the end of my year's TCZ. (Exactly three years since I contracted GCA, now on 3 mgs Pred. ) The conversation as to whether there'd be an extension was quick: the answer was no, she said there was no point in even asking for it. The reason was what surprised me, however... not that it's expensive and we're only allowed it for a year; but that the rationale now being given (presumably by NICE?) is that tests and data aren't proving conclusive enough that it does any good.

Comments?

[DorsetLady PMRGCAuk volunteer]

the rationale now being given (presumably by NICE?) is that tests and data aren't proving conclusive enough that it does any good.

Interesting… but might have been useful if trial period had been longer than a year….as we patients well know, GCA is highly unlikely to be in remission within that timescale…

but then they didn’t ask us did they?

[Frewen1 in reply to DorsetLady]

Not me, anyway !

[DorsetLady PMRGCAuk volunteer in reply to Frewen1]

Probably not anybody...😏

[Devoid]

Very interesting I had Toc for nearly 2 years because of the pandemic they prolonged it. I was off pred altogether. Within 3/4 months of stopping I was ill again and have been back on Toc since ct pet scan showed active vasculitis, Now well on just Toc . Not sure that Nice are collecting evidence, I have never been asked to take part in any studies and I would say I’m an interesting case .

[Devoid]

Very interesting I had Toc for nearly 2 years because of the pandemic they prolonged it. I was off pred altogether. Within 3/4 months of stopping I was ill again and have been back on Toc since ct pet scan showed active vasculitis, Now well on just Toc . Not sure that Nice are collecting evidence, I have never been asked to take part in any studies and I would say I’m an interesting case .

[PMRpro Ambassador]

Well it probably isn't based on the 1 year limited use they decided on. It's bl**dy marvelous for most while you get to take it but if you are forced to stop after a year, the chances are you will relapse.

I have a suspicion they may have asked in a consultation that most patients never got to hear about.

However - I did catch something that pretty much parallels the conclusion the Italian group came to about using methotrexate in PMR. In the first trial there was a small but significant reduction in the cumulative dose of pred after a year. But when they revisited the patients after 5 years, they found that there was no difference between the groups in terms of pred adverse effects. Which really does beg the question - why add in a second drug with potential adverse effects if it isn't going to change the feature you have made a big thing about? If something similar has happened with TCZ in longer term use studies when you add together all the potential results either way, maybe it didn't make sense to continue with it.

I can identify benefits to me from being on much lower pred - my skin has improved no end, especially on my shins, and I have started to lose weight, but I have always been quite lucky with no nasty side effects so is the extra Rome has spent on me really justifiable? I'm happy, my rheumy is happy - but at what price?

[Frewen1 in reply to PMRpro]

Interesting. I have no idea what difference the TCZ has made… still feel wobbly, sluggish and intermittently exhausted as I have in various degrees for past 3 years. Are you saying you think I might have a flare now I’ve stopped ( yesterday in fact )? Hope not! Down from 60mg twice, still fat (for me) but face improved. Well, we’ll see …

[DorsetLady PMRGCAuk volunteer in reply to Frewen1]

Very unlikely that you’ll need such a high dose again though…. And the symptoms you describe are probably adrenals struggling now you are down to 3mg…

I wouldn’t be in any rush to reduce Pred…..and fingers crossed it’s plain sailing…

[PMRpro Ambassador in reply to Frewen1]

Do you mean yesterday was the first day you missed a jab?

You don't know - the hope with TCZ is that in the meantime the underlying autoimmune cause of the GCA symptoms has died down, possibly even burned out. It would have let you get to zero pred (if you are one of the lucky 50%) anyway had you carried on with it - but it has taken me 15 months to get from 19 to 5mg with just PMR. They THINK (but don't know) that the TCZ stopping the IL-6 having an effect may result in feedback to the immune system to reduce its autoimmune activity. But it isn't guaranteed and I know several who have been on TCZ for 3 or 4 years and aren't off pred yet, never mind tried it without. It is a very expensive steroid sparer, it cures nothing but achieves time at a low dose of pred. Time will show whether the extra cost is justified by the reduction in long term steroid consequences.

[potterylady in reply to PMRpro]

I'm right there with you on this. I have no idea if TCZ is helping me. I'm one year in with GCA & PMR and am slowly tapering from 32.5mg to 30mg, after a 2 to 3 month flare. And I certainly would not want to be on TCZ if I knew it wasn't helping me, but I can't tell and I'm afraid I'll get worse if I taper the TCZ.

[PMRpro Ambassador in reply to potterylady]

How long have you been on it? I found it was 3 or 4 months before I could confidently reduce the dose - and my rheumy had said that, that for some patients it doesn't work as fast as the clinical trials suggested so doctors need to take it steadily. It's over a year now and really I'm starting to feel something different.

[potterylady in reply to PMRpro]

Hummmmm what are you feeling that's different? I've been on TCZ for almost a year now. I'd rather not take it if it's not helping, but hard to know.

[PMRpro Ambassador in reply to potterylady]

I can't explain it - it is a lessening of the back problems I have I suppose. Whether it is the TCZ or just time I don't really know - but I'm not going to stop it to find out!

[potterylady in reply to PMRpro]

Totally!!! I wouldn't either!!!!

[PMRpro Ambassador]

Did your cholesterol not rise with Actemra? Mine did.

[Frewen1 in reply to PMRpro]

Ah …just been told that mine is high …that’ll be why, I guess. x

[PMRpro Ambassador in reply to Frewen1]

It is a recognised and common effect of TCZ.