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That is fantastic. Well done for being persistent and getting such a good
outcome. I wasn't aware that there was anything else that could treat
polymyalgia. I have asked my GP for a referral to a rheumatologist on
several occasions but she is not allowed to refer me to one for PMR so I
have to deal with a GP who, although well meaning, doesn't have any
expertise in treating this condition. However, I have an appointment with
her at the end of the month and I plan to take the information you kindly
sent me to ask her if she can give me a trial on a biologic. I'm not sure
if this is something that is given on the National Health Service in the UK
but I really hope it is as I loathe being on prednisolone and having PMR
for the rest of my life. Thank you so much for taking the time to respond.
Kind regards,
Mary
Replies to "That is fantastic. Well done for being persistent and getting such a good outcome. I wasn't..."
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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