Sarilumab - brand name: Kevzara : Hi My Mum was... - PMRGCAuk

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Sarilumab - brand name: Kevzara

Sefu profile image
Sefu
6 Replies

Hi My Mum was diagnosed with GCA last May and has had a very tough time with bad reactions to medication. She was therefore switched to TCZ about 8 weeks ago and suddenly itching has gone mad especially at night and the thinking is to help with anti-histamine and to switch from TCZ to Sarilumab. I am keen to try and address the reaction with anti-histamine and diet control for now rather than changing everything at the same time. Any information on Sarilumab and/or thoughts ? Thanks.

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HeronNS profile image
HeronNS

The information sheet on sarilumab is rather concerning but I don't know if it's any worse than tcz. hopkinsarthritis.org/patien... Has it ever been used on GCA patients or is this a completely off-label effort on the part of the doctor? It looks like clinical trials were in the process of being set up but have been suspended for the duration of the pandemic.

What kind of reaction did she have to prednisone?

Sefu profile image
Sefu in reply to HeronNS

Hi Pred and Methylpred crossed the 'blood brain barrier' to a serious extent, so switched to TCZ.

PMRpro profile image
PMRproAmbassador

"and the thinking is to help with anti-histamine and to switch from TCZ to Sarilumab"

Whose thinking? It is another IL-6 antagonist like tocilizumab/Actemra. However, although it is already used in RA as far as I know it hasn't been trialed in GCA which means it won't have been approved for use - and that is usually required for approval of funding. Unless they are intending fudging the diagnosis ...

Sefu profile image
Sefu in reply to PMRpro

Hi The consultant's thinking.

Sefu profile image
Sefu

Thanks !

SheffieldJane profile image
SheffieldJane

I am on Tocilizumab and get itchy nights. I find E45 base cream helps a lot. Of all the side effects this has been quite easy to manage. I have had this reaction to other meds too. As far as I know Tocilizumab is the only proven alternative to Prednisalone.

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