Tocilizumab

[Lellylam]

Anyone else on Tocilizumab for pmr and gca? I can’t take steroids

[PMRpro Ambassador]

Have a look at the Related Posts - there are a few people on TCZ for GCA, the only person I know of on it for PMR is DadCue as far as I know since it isn't approved for PMR and he has a very complex diagnosis including PMR and is in the USA. In the UK it can only be used for relapsing/complex cases of GCA>

[Lellylam in reply to PMRpro]

Thanks. Do you know why it’s not approved for PMR?

[PMRpro Ambassador in reply to Lellylam]

Approval for a drug depends on successful completion of clinical trials amongst other things. They have been done for GCA but not for PMR. Then part of the approval process in many countries includes the cost/benefit/effectiveness relationship. Tocilizumab costs about £12K per year. Pred costs pennies in contrast, it works well in PMR and most patients aren't on a higher dose for very long. If every patient with PMR were to be put on TCZ, the cost would become unsustainable.

[Horsewhisper]

I’m on Tocilizumab for GCA and I’ve just been diagnosed with PMR. I was on a tapering dose of Pred and got down to 9 mg - but now back up to 15 mg Pred and feeling less achy and stiff.

[Lellylam in reply to Horsewhisper]

Did you have any hair loss?

[Horsewhisper in reply to Lellylam]

No hair loss with TCZ, but I did have with Methotrexate. No longer on that as I couldn’t tolerate it.

[Lellylam in reply to Horsewhisper]

Thanks for reply. What about heart palpitations. I’ve just started on it and don’t feel great but not sure if it’s my health anxiety

[Horsewhisper in reply to Lellylam]

I have heart palpitations anyway and these, I think, are made worse with higher doses of Pred (over 20 mg). I don’t think TCZ has an effect on them for me.

[technogran]

Hi there, I've been on steroids for almost 2 and 1/2 years and TCZ for 2 and1/4 years for GCA. You've got my sympathy if you also have PMR. I don't know how effective TCZ is cos I have nothing to compare it to but my cons seems to think its great. The lowest dose of steroid I got to last year was 9mg but then I thought I'll taper to 8.5mg and it flared up again causing me to return to 22.5mg! I'm now at 16mg using the Swedish method which I know is slow but does work for me if I don't become over ambitious. Good luck.

[GratefulBailey]

Tocilizumab did not increase my heart palpitations nor did it cause hair loss (as opposed to prednisone!); for the first 2-3 months, I felt "off" the day following my injection...almost flu-like, but this resolved over time.

[Lellylam]

Thanks. I’m not on pred as can’t take them. Hope this is enough