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Polymyalgia Rheumatica (PMR) | Last Active: 2 hours ago | Replies (69)

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@dadcue

Sorry ... I didn't realize you were from the UK. Someone told me the rules in the UK are different from here in the USA. I guess the only option for PMR in the UK is prednisolone.

Unless you have GCA you won't be able to get the biologic that was used for me. I was never diagnosed with GCA when the biologic Actemra (tocilizumab) was tried. I think Actemra (tocilizumab) has the brand name RoActemra in the UK and is only used for GCA. I was told my experience with Actemra to treat PMR wasn't pertinent to a PMR forum based in the UK. It was sad because I really liked the forum.

Actemra isn't FDA approved in the USA for PMR either. My rheumatologist was able to get a waiver and got it approved for me. The reason it was approved was because I was unable to taper off prednisone and my case of PMR was called refractory. He also mentioned that "all other alternatives were tried and had failed to get me off prednisone.

There is another biologic that is FDA approved in the USA for the treatment of PMR. It is called Kevzara (sarilumab). The way it works is basically the same way Actemra works. Both Actemra and Kevzara block the pro-inflammatory effects of the cytokine IL-6 that is implicated in PMR and GCA.
https://nras.org.uk/resource/il6-receptor-inhibitors-tocilizumab-and-sarilumab/
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I wish you luck with tapering off prednisolone. I mostly wanted to encourage you to keep trying. My rheumatologist said if I only needed 3 mg or less of prednisone for the rest of my life ... that dose might be okay. The endocrinologist said I was very lucky to be able to taper completely off prednisone after being on prednisone for such a long time.

I wish you well and free of both PMR and prednisolone.
Mike

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Replies to "Sorry ... I didn't realize you were from the UK. Someone told me the rules in..."

Yes, I thought the rules might be different in the UK. However, I am going to discuss the information you sent to me and ask my doctor if there is anything similar she can prescribe as I struggle to believe when anyyone is on prednisolone as long as I have been, and in all likelehood, will have to be on it for life, that there is nothing they can do. I will also do some research into this in the UK.
The information you sent is very encouraging as it is so good to hear that you managed to get off prednisolone after such a long time. I really like this forum as I learn so much from it. Thank you again.