Tocilizumab after 12 months : Hi interested in if... - PMRGCAuk

PMRGCAuk

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Tocilizumab after 12 months

Devoid
Devoid

Hi interested in if anyone has been on tocilizumab for GCA and what has happened after the 12 months nice funding

16 Replies
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Hidden
Hidden

Hi, there was a member last year that basically had hers stopped after 12 months but made an appointment and got it prescribed for 3 more months. Racking my brain. If I remember I will post.

Hidden
Hidden in reply to Hidden

healthunlocked.com/pmrgcauk...

There are a few people taking it that popped up on that thread. You may want to look at related posts. Hope someone can help..

From what I have read for many conditions not just GCA it is stopped at 12 months , unless you can get funding for special circumstances upto 6 months but that seems incredibly hard to get unless you have the right Consultant who is connected or can well state your case as unusual or in severe need.

It's hard enough to get on in the UK as well , I may have to move for funding for it.

Hidden
Hidden in reply to Blearyeyed

Did you ever get approval? Never mind ... I guess not if you have to move.

Blearyeyed
Blearyeyed in reply to Hidden

I still have to wait for EDS Typing/ genetics test, but have heard on the Lupus grapevine that Wales are not automatically following the same rules as England on prescribing Biologic Therapy anyway , except for a few things like RA .

I have a Cardio appt at the end of this month at which I plan to push for my genetics test and cross border EDS referral to be sorted via them not Rheumatology , but I will also be asking out right if the same prescription restrictions are going to happen in North Wales as are happening in Mid Wales and the South even after getting my genetics results .

If it is , it may be less stressful and take less time to pack up and cross the 100 miles over the border back to England.

I was thinking about you earlier when your name popped up on another post and wondering how you got on with your scan and if you had any more news.

Could you write a post to let us all know ? I don't want to take over this one but would like to know how you got on .

Hidden
Hidden in reply to Blearyeyed

I will update the original post because I don't want to start a new post. I know what I was told but will need to review the MRI report. I'm currently waiting for another EMG and nerve conduction test. I will work on it tonight but don't wait up.

Blearyeyed
Blearyeyed in reply to Hidden

👌👍

Come and stay with me if you like Bee. X

Oh , that's so kind , but I don't know wether your OH would be happy having me permenantly resident with you , we may just be so unstoppable it would send him over the edge!💏😋😂😂😂😘

He can stuff. He’s always away working. Downing Street tomorrow, for some sort of Higher Education Reception. The Boris will be there. I might just clear out my wardrobe, full of pointless work clothes and thin clothes. I don’t need help to push him over the edge. You can imagine my reaction when I woke up to hear that my Rheumatologist had been trying to get hold of me!

Yes , I've been there , if I remember rightly I'd been hanging by the phone for four days beforehand so you would have thought someone in the house would have noticed I really needed to speak to them.

Going on 2 years and off prednisone and doing fine with it. The 12 months was just the length of the study, they are not saying you can't stay on it, they just stopped the study at 12 months and monitored the patients for 2 years after.

PMRpro
PMRproAmbassador in reply to GCA_Patien

Depends where you are - some countries only approve funding for 12 months of use of tocilizumab. So yes, they are saying you can't stay on it.

Devoid
Devoid in reply to PMRpro

That’s it in the uk unless you are on a trial/research program. When I saw the consultant last week he said that they hoped as more data became available nice would reconsider the time limit. I am only 4 months in , but it’s difficult not to worry about it as steroids and methotrexate didn’t stabilise my condition and my health was deteriorating very quickly. Tocilizumab has certainly improved a lot for me, now just sort out the dreadful fatigue!

PMRpro
PMRproAmbassador in reply to Devoid

Is the fatigue worse with TCZ?

Devoid
Devoid in reply to PMRpro

No I feel it’s much better, but the problem is that I now feel able to do more, then it catches up with me and then I feel rather deflated. Family and friends keep pointing out how much better I am than in the autumn, but it still seems a long way off normal,at least going in the right direction

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