PMRGCAuk
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NICE and tocilizumab

I would just like to say a big thank you to everyone who responded to our straw poll on GCA. It was really useful and we used the results in answering questions from the NICE committee about how many people stay on steroids for longer than a couple of years.

We are now waiting for the results of the second round of consultation. We had 19 patients and one carer submit their responses on the NICE website, and the committee seemed quite impressed by that. Also the BSR put in a very strong submission, as did PMRGCAuk. Discussion in committee turned on the likelihood not that people would be able to come off steroids after a year but that they would come off TCZ after a year, having got down to a low dose of steroids or in some cases come off altogether (meaning that they are in remission). Their report the first time round was very concerned that people might be on TCZ for much longer, e.g. two years or more, which would of course be extremely expensive. What might happen is that they refuse the approval but say they will review it in a short time e.g 12 months, when there is more evidence of the length of time people will be on TCZ. Or they might give approval but say that an individual patient will only be funded for TCZ for one year. We didn't get any indication in the meeting which way they would go. Witnesses and public have to leave when they do the 'real' talking.

Hope in a week or so we will be able to share the NICE verdict. Fingers crossed!

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oldestnewest

Well done for all the time and effort you and the committee have given. I see there was a good article in the Saily Mail on the subject recently - I think it's going to be too late for me but wonderful if it will be available in the future so that other GCA sufferers don't have to endure what I have for twenty months.

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I helped a little Kate. So I have been on

Tocilizumab about 14 weeks now. I just learned I have almost no adrenal function and have to stay at 6.5. This means I wean of Tocilizumab and stay on steroids the rest of my life. It only took me three months to get from 20 mg of prednisone to 6.5 mg. And help me get to a reasonable number in only 14 weeks and I have been trying to do that for 3 1/2 years. Now knowing that I will be on 6.5 or maybe even 7 the reduction of this drug will be tricky. I think that instead of doing one shot a week I will go to one shot every 10 days for two weeks and then one shot every other week and so on. I might have to stay on the drug for another two months. So for me it would be a total of six months. We will see what happens. I hope you were able to make a little headway.

Marilyn

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Of course it would be great if the drug was approved without any conditions. But if it got approved for one year that would help dramatically in getting the prednisone/steroids down to a minimum because on Actemra. We might be able to get away with diabetes, Eye issues, muscle myopathy and that list goes on. Latest is adrenal insufficiency. I am hoping for you that it gets approved. Marilyn

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