Tovilizmuab: Is anyone here on the new trial drug... - PMRGCAuk

PMRGCAuk

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Tovilizmuab

Ttypoo profile image
5 Replies

Is anyone here on the new trial drug Ticilizhuab? I think it administered once a month and would greatly value your thoughts. I am steroids but gather that this new drug stops PR from reoccurring.

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Ttypoo
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5 Replies
SheffieldJane profile image
SheffieldJane

Do you mean Tocilizumab? Prescribed in the U.K. for GCA? It lowers the inflammation and enables patients to reduce Prednisalone quite quickly. Nothing can prevent it reoccurring in some unlucky people though.

jinasc profile image
jinasc

TCZ is not available for PMR in the UK.

It would be helpful if you could expand your profile - ie Location Date Diagnosed etc.

Currently there is no cause or cure for either GCA or PMR and not for most auto-immune illnesses. I gather that the body turning on itself is the most difficult areas in research.

Pred helps you to manage it in the best possible way until it decides to go into remission.

Ttypoo profile image
Ttypoo in reply tojinasc

Many thanks for this update, I only heard of this by way of a friend and therefore really appreciate your reply and so pleased to have this site which is informative. Much appreciation everyone good New Year wishes let’s hope 2022 will be a healthy one.

PMRpro profile image
PMRproAmbassador

Tocilizumab isn't a trial drug - it has been in use for RA for some years and approved for difficult to treat GCA for a few years. They also don't usually use the monthly infusions for GCA but the weekly self-administered subcutaneous injections and only for a limited time in the UK. There is no evidence that it stops either GCA or PMR reoccurring - in fact, the post marketing trial for GCA suggests that after discontinuation of the injections some patients do relapse although restarting the tocilizumab then brings it under control again.

It has not been through clinical trials for PMR, just a few small short-term studies which do suggest it works welll for PMR too. However, without full clinical trials and the evidence, it will not be approved for use in PMR so any use is off-label. Even with approval it is unlikely to be made available in the UK for general use in PMR - it is very expensive.

If you correct the spelling in your title, you will pobably find a lot of relevant posts listed in Related Posts.

Ttypoo profile image
Ttypoo in reply toPMRpro

Many thanks for your informative reply.

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