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.