Tocilizumab extension : Hi just to let you know I... - PMRGCAuk

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Tocilizumab extension

Devoid profile image
11 Replies

Hi just to let you know I’ve received a txt today regards tocilizumab delivery for the end of the month so that will take me to July. Has anyone else had their prescription extended?

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Devoid
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11 Replies
PMRpro profile image
PMRproAmbassador

That's good!!

Rugger profile image
Rugger

Yes, my extension takes me to May.

christine2715 profile image
christine2715

They come in 4 injection boxesI now take mine once a month so mine last 4 months. Have been on it 3 years now.

Devoid profile image
Devoid in reply tochristine2715

Hi are you in the UK ? At what point did you go to monthly?

christine2715 profile image
christine2715

Hello Devoid, gradually moved weekly to monthly. I think went monthly about 18 months ago. Tried 5 weekly but relapsed. Am also now taking mycophenelate to support reduction

Devoid profile image
Devoid in reply tochristine2715

Thanks for the quick response, that’s very interesting I’ve not seen anything about taking that far apart, are you still on pred or is is the mycophenelate instead of pred

christine2715 profile image
christine2715 in reply toDevoid

3mg pred told to stay on that as I am prone to relapse. Had GCA 5 years now

Devoid profile image
Devoid in reply tochristine2715

Thanks again,I’m not sure what the plan is for myself as I have had my consultation cancelled for March and not rescheduled. The fact that they are delivering again at the end of the month suggests the consultant is keeping me on it for the time being, but still leaves me a little anxious for the future. I’m off steroids so I’m feeling stronger and hopefully the improvement will continue. Hopefully you will continue to feel better 😊

jarn profile image
jarn

Hello. I just had my TCZ extended for another year; taken weekly. Rheumy had to re-apply for the extension.

scottygirl73 profile image
scottygirl73

I am getting delivery on Friday i get it every 10 weeks (should be every 12 weeks but it is always late) i have been on this for over a year,am off steroids after 7 years see Rheumy in Sept,see if i will be stopping it ??xx

christine2715 profile image
christine2715

By the way I advise you to keep on the case when your next delivery is due. It seems to take time to authorise and I had bad relapse as was 2 weeks overdue. I was on 2mg pred but caused me to go to 3mg.

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