Dear Angels,
My Rheumatology group and I are in search of a way to GET ME OFF MEDROL while stopping the very intense pain of PMR. After 2.5 years of Medrol my polymyalgia rheumatica is not gone. Every morning I wake up with the pain, but it does seem less noticeable as the day goes on. I'm currently on 5 mg Medrol/day.
At least it's not waking me up at 3 am like it did for years.
So far we've tried Methotrexate, which was supposed to take over the function of Medrol, so I would feel OK and could taper. Unfortunately Methotrexate caused elevated liver enzymes, so I couldn't use it to help my PRM.
Now I'm on Leflunomide, which is a daily tablet, not a weekly injection. I will have the lab work in about 30 days to see if Leflunomide also causes liver problems.
Warming up in the Bull Pen is Kevzara, a monoclonal antibody medication for RA, newly on label for PMR. I have been impressed with monoclonal antibody treatment for my husband's Chronic Lymphocytic Leukemia. 6 months of infusion put him in remission! The monthly infusions were billed at $50,000 each, and Medicare paid it all. And it didn't make him sick at ALL.
Unfortunately Kevzara is not an infusion, so it's not under Medicare Part B and my drug plan doesn't currently cover it.
I was told I would need an injection every two weeks, and according to prices I've researched, the annual cost would be very high. However the drug companies offer subsidies to patients diagnosed with PMR and that brings the cost to almost nothing, so I've read.
My husband believes that the drug companies want LOTS of people using the drug (successfully!) so that demand will increase and the manufacturing of lots of the drug will lower the price, in the long run.
Kevzara (and another drug much like it: Actemra) is an IL-6 surppressor. I guess that is anti-inflammatory, I don't really understand it all. But I can discuss it with my husband who was a PhD researcher in immunology at a Medical Center.)
Anyone using Kevzara or Actemra? I'd love to hear from you.
Elaine