PMR, Actemra, and IgM antibodies

[grandemr]

I was diagnosed with PMR about a year and a half ago. Started with methotrexate and plaquenil for a few months, and then started monthly Actemra infusions. I'm pretty much pain free these days, primarily because of the Actemra, I think, and I'm now getting an infusion every two months. Blood tests indicate that the inflammation is under control. Just wondering about how long others have taken Actemra - what's the normal course? Also, my rheumatologist is worried about my IgM cardiolipin/antibody levels - not abnormally high but not low enough for him to stop the Actemra. Anyone have any information about the IgM antibodies?

[PMRpro Ambassador]

I don't think there is a "normal course". It hasn't been trialed for PMR, just GCA and there they still don't have evidence for how long it needs to be used for or whether it achieves a temporary or permanent remission, that part of the trial is still running.

As the doctors are working in the dark I think one approach is to get the symptoms in remission and then extend the time between injections or infusions to find how often they need to be given to maintain remission. In the UK, even for complex GCA cases, it can only be used for a year and then is no longer funded by the NHS.

I'm sorry but don't know enough about IgM antibodies to comment although this

file:///home/chronos/u-d64ecfda43f8e19714f79d0bf97e5fd0ecd819cf/MyFiles/Downloads/208.full.pdf

doesn't seem to think they are very significant but it is not really recent. A letter from Dasgupta to the BMJ in 2008 said

"IgM or IgA anti-CCP antibodies appear not to have a role in diagnosis or prognosis (relapses, peripheral involvement or cumulative steroid dosage). IgG anti-CCP positive patients were few but on a 12-month review of the diagnosis were considered either as not PMR, atypical or unlikely to be PMR."

So the question seems to be "Why is your doctor concerned about them?"

[grandemr in reply to PMRpro]

He says that elevated scores place me at risk for a stroke. There's a family history.

[grandemr in reply to PMRpro]

I really appreciate your reply. I'm in Taiwan. The health care is amazing. And my insurance keeps covering the Actemra.