PMRGCAuk
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Stelara/ustekinumab for GCA treatment

Hello! I know this site is located in the UK, but I was hoping that, whereas I live in the USA, I could still be a part of it. If I have to be a UK resident, please just let me know. I will understand.

I just began receiving injections of Stelara/ustekinumab to treat my GCA. In the states anyway, it is currently used to treat those with psoriasis, but they have reason to believe that it may actually force GCA into remission in about a year's time.

Does anyone else receive this or has heard of this being done?

Thanks all!

MJ

New Hampshire, USA

19 Replies
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Hi MzDisney and welcome. There are contributors from America, Canada and various parts of Europe on this site. It is useful to share our different experiences of GCA and PMR and the treatments we are given etc.

For instance I have never heard of the drug you are being injected with and anything that could force GCA into remission in about a year's time. I am sure a number of Brits with GCA would be interested in learning more.

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Thanks for making my input valuable. I will try to keep this forum informed about this treatment.

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I'm from CT. Have been on here for about a year. It's a wonderful help. I have PMR so can't comment on the GCA treatment but wanted to say Welcome!

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Thanks for the welcome!

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Welcome MzDisney

Just to say Hello & that everyone is welcome, it's always good to hear about different treatments. There are quite a few members on here from the USA

Best Wishes

Mrs N x

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Thank you??? 😁

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lol Just realized that I put in question marks. Those were supposed to be exclamation points! OOPS!!

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You can edit - click on the righthand box with the downward pointing arrow...

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Yes, welcome and do keep us informed about your treatment please!

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Will do! Thanks!

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Another welcome! I have GCA and would be very interested in the progress made with this drug. I personally, like others here so far, have not heard of it. Jackie

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I'll post an update in a few months after I can gauge what, if anything, it's doing for me.

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Not at all! You'll find several compatriots here - and there are several others on the patient.info PMRGCA forum. Plus a few around the Pacific rim! It does help when people say WHERE they are with regard to appropriate advice but otherwise - PMR and GCA are international unfortunately!

Why ustekinumab? Tocilizumab has already been through a Phase 3 clinical trial, been awarded breakthrough drug status for GCA by the FDA and is being used in the USA already with not only support from the company but also approval from medical insurances.

Ustekinumab is being used in a prospective or pilot study in Ireland:

ard.bmj.com/content/early/2...

Is your rheumy in contact with them?

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My insurance wouldn't approve the expense for the Actemra. I'm using the Ustekinumab in a study for a year. Why would my rheumy need to be in touch with the people doing the study in Ireland? I have no idea what goes on behind the scenes and what the protocol is for initiating a study, so I really can't answer that.

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I just wondered - it is a prospective study which it sounds is what your doctor is also doing.

Good luck with it - and it will be interesting to hear how you get on with it. It targets a different cytokine to tocilizumab - and it is cheaper. The more they can find that works the better!

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That's all I can hope for at this point!!

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Hi MJ, welcome to the site 😊

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Thanks!!

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Here's an article:

medscape.com/viewarticle/86...

Sounds like a really interesting line of research, hope it proves helpful!

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