GCA NICE Recommendations UK Tocilizumab - PMRGCAuk

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GCA NICE Recommendations UK Tocilizumab



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For Refractory GCA Patients, your country posted these recommendations for Actemra (Tocilizumab) for GCA.

I am a refractory patient.

Do not worry. I will not post again or look at comments. However, this is the information printed by your country.

11 Replies

"the most likely cost-effectiveness estimate compared with glucocorticoids alone is £24,977 per quality-adjusted life year gained."

What is a quality-adjusted life year gained??? It sounds like something a bureaucrat would say.😂

I know am I wasting my time, but I dislike someone posting and then saying

"Do not worry. I will not post again or look at comments. However, this is the information printed by YOUR country."

So just in case you take a look...................

Why not put the country you live in in you profile?

YellowbluebellAmbassador in reply to jinasc

This woman has been told if she cant behave on here to take her views somewhere else after insulting pmrpro, poops and the forum. This is the one me and poops were dealing with the other night!! Restriction coming up it would seem.

DorsetLadyPMRGCAuk volunteer in reply to jinasc

My thoughts exactly.

YellowbluebellAmbassador in reply to DorsetLady

She has been restricted!! Couldnt face another argument at 2.30am!!


I warned you the other day that if you couldnt behave on the forum to either delete yourself as you threatened to do or i would do it for you. You are now restricted on this forum.



This is useful. It has been posted on here before but thanks for the reminder.

jinasc in reply to SheffieldJane


I would not do this normally, but I suspect this Lady lives in the USA.

For quite sometime in the USA, there are numerous Class Actions in relation to Actemra. None of whichc have been settled. These are mainly in relation to the use in RA.

I am happy to see her restricted.

There is not one drug in the world that does not have side effects..........................however they rarely effect all.

YellowbluebellAmbassador in reply to jinasc

We have had to make the same assumption as she obviously chose not to fill her profile details in!! When she started getting nasty with pro about her lack of knowlege of gca and then verbally attacked poops, it was time to say goodbye. I have to admit to a bit of pleasure when hitting the restrict button on this one!!

SheffieldJane in reply to jinasc

I posted before I knew there was any history at all, having missed all the exchanges. I am very invested in this forum as being a safe haven of peace, harmony, information and healing. I am concerned now, that new folk especially, may not understand what’s going on or what rules have been broken. On the surface, it seems a rather harsh thread.

The link has been posted before and as I said, I posted in all innocence. It is about the criteria for prescribing Actemra in the U.K. - not side effects. It’s probably the “ nesting” or whatever they call it, making the wrong posts seem earlier.


Jane there are no issues with your reply and we realise it was done before i replied and restricted her. The original post goes back some days and was dealt with by myself and poops after repeated attacks on pmrpro, poops and then the forum as a whole. At thus tine she was warned by myself that if she couldnt act reasonably on the forum then the next step would be a restriction.

THIS IS a safe and friendly forum and its because we weed out nasty opinionated replies, posts, trolls and spam. This issue was happening at the same time as mrsnails and myself were discussing.the issues caused by another member and who mrsnails restricted to stop you and the others being subjected to their nasty vicious posts and replies!!The whole night involved 2 moderators and an ambassador duscussing these people at 2.30am.

Newbies have to make their own minds up on whether they want to use this forum but if they choose not to becsuse of one thread there isnt a lot we can do unless we let these people remain even though its upsetting other members. I suspect i know the answer you would give but i will still ask the question, what would you expect or want us to do?YBB

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