Actemra infusions

[Cgt1151]

I have discussed my journey with PMR and GCA a few times here. February will mark 5 years since I was diagnosed, though I'm sure I had it for 2 years before I was diagnosed. I have not had very good luck with tapering off the prednisone. I have been on Kevzara injections for about 3 months but started having allergic reactions,so have discontinued those. They did not seem to help with tapering the prednisone. While taking the Kevzara I had a major flare and had to return to 10mg. I have to say, I feel closest to normal at 10 mg. Still have stiffness when I sit for extended periods of time and when I get out of bed. But at least I can walk normally. My doctor wants to start me on Actemra infusions. I am leary of biological. Does anyone have any experience with this treatment. Also is it possible to just stay on 10mg of prednisone long term without major side effects? Thanks for all the help everyone here gives freely. You have all been so helpful.

[PMRpro Ambassador]

I am on Actemra injections for PMR - the trials in GCA and studies in PMR since have all been done with the injections but for some reason the USA insurers insist on using the infusions. Since these are at 4 weekly intervals, I am concerned that as the interval lengthens, the effect wanes. I can just manage 2 weekly injections but any longer and the stiffness starts to return. Another patient on the forum was fine on 2 and even 3 weekly injections to taper and then LVV developed in the background without notable symptoms.

Both Kevzara and Actemra have a very specific target, the IL-6 that is the primary source of the inflammation but there are other mechanisms underlying the inflammation on which they have no effect at all. If your GCA or PMR involves them - you need some pred though it is impossible to say how much.

My rheumy, an expert in this specific field, said it can take some months for the biologics to develop full effect and not to be in a hurry to taper - I think I waited a couple of months but after that had no problems down to 7mg but I am stuck there, lower and the bicep tendinitis pain returns and I can't use my hands/arms which isn't very helpful!

I have been on pred for 16 years, a lot of it at above 10mg/day and since the beginning of the pandemic had been at 15mg and above until starting Actemra. I have no identifiable problems with pred - my bone density hasn't fallen although I have developed a single spinal compression fracture so that could be debatable although I have other potential underlying causes which could all add up. I gained weight with PMR and with methyl pred, I lost weight with low carb eating and that has also protected me from steroid-induced diabetes. The skin on my shins was a bit delicate at the higher doses, it is getting back to normal now I am consistently well under 10mg.

Pred CAN cause all sorts of problems. We have said for a long time that they can be avoided or mitigated when you know how. And the question remains - is a bit less pred at the expense of a VERY expensive but pretty effective but not guaranteed biological steroid sparer or even a less expensive and sometimes effective DMARD as a steroid sparer significantly preferable to "just" pred? Discuss ...