← Return to GCA prednisone vs. actemra infusion therapy

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@dadcue

@krueg and @julie4868

Being on Actemra infusions for 17 and 14 months respectively seems like a long time. Actemra won't work for everyone. By contrast, I was on prednisone for 12 years and wasn't able to taper my prednisone dose much below 10 mg. During much of the 12 years my prednisone dose was closer to 30 mg.

My rheumatologist said when I started Actemra that I should start to feel some improvement in 3 months. After 3 months, I wasn't so sure I felt any different but I sure was able to easily taper my prednisone dose lower to 3 mg without a flare. I didn't feel better until I got off prednisone completely.

It took me a year to taper off prednisone completely. I haven't had any flares of PMR while on Actemra. I did have a flare of another autoimmune condition. My ophthalmologist took me off Actemra in order to try a different biologic. I requested to go back on Actemra because Actemra worked better for me.

Given what both of you have said, I would be inclined to believe that Actemra isn't working well for either one of you. Actemra is supposed to have "robust steroid sparing effects" for people with PMR. You might not be able to taper off prednisone like I did but you should be able to achieve remission and not have flares.

Methotrexate is frequently given along with Actemra so it might make a difference. I personally didn't need methotrexate to taper off prednisone. I have used methotrexate and prednisone together with some success. I'm not so sure Actemra, prednisone AND methotrexate is a good idea. Taking two immunosuppressants is bad enough but taking three medications for PMR seems unwarranted.

This is just my opinion and I'm not a doctor.

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Replies to "@krueg and @julie4868 Being on Actemra infusions for 17 and 14 months respectively seems like a..."

DadCue….Thanks for sharing your experience. I see now that I forgot to specify that I have GCA (and PMR). I agree that taking 3 immunosuppressants does not sound like a good thing, but inflammation from GCA is definitely not. And the plan is to continue tapering prednisone, hopefully discontinue it or at least get to a low dose.