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GCA prednisone vs. actemra infusion therapy
Polymyalgia Rheumatica (PMR) | Last Active: Nov 22 10:27am | Replies (48)Comment receiving replies
I am here to ask the same question. I’ve been on Actemra infusions for 14 months, and tapering prednisone which I have been on for 3.5 years.
I had a flare 5 months ago, had to increase prednisone to 35 mg to get it under control. Now down to 25 mg and can’t get it lower without flare, and my (new) rheumatologist has prescribed methotrexate, which I will start this week, along with increasing my dose of Actemra. I am hoping the methotrexate dose (15 mg/week) will not be high enough to cause significant side effects.
I hope we will get some responses on this. I will post my experience when I have more information.
Replies to "I am here to ask the same question. I’ve been on Actemra infusions for 14 months,..."
It’s been 8 months since my Feb 26th post. Here is the update I said I would give (after seeing a recent “helpful” tag on my Feb post).
Since March, I have added 15 mg methotrexate weekly,
Increased dose of monthly Actemra infusions to 8 mg/kg (up from 6 mg) and tapering prednisone, from 20 mg in March, now at 2 mg.
I have had no illnesses since going on this regimen, and no significant side effects, (some mouth sores for a month or 2 after starting the Methotrexate). No definite signs of relapse. It’s going well. The plan is to continue prednisone taper (0.5 mg every 2 weeks) until off, then drop the MTX, then decrease Actemra back to 6 mg/kg. Then, hopefully off that too. This is if all goes well of course. I was hoping I would be sleeping better after getting prednisone down this low, but that is still a problem many nights.
I’ll post again when there is anything helpful to report.
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@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.