Thanks, now I have lots to think about
I appreciate your comments and sharing of experience. Obviously lots of collective experience. My wife, Frani, seems to have hit a low point about a day after her second IVIG tx and may have plateaued a bit. A little less neuropathic / paresthesia pain and perhaps a slight strength gain. It’s very subtle, but at least no worse in the past few days. There had been such a rapid deterioration!
No, she had not started on pain meds yet. If the pain worsens though I will certainly encourage her. I was thinking a low dose of amitryptaline, like 10-25mg before bedtime (it’s nights that she has the biggest problem). If no luck then possibly switching to neurontin 300 tid?
I appreciate the reminder about how draining pain can be and how little reserve she probably has.
Also, I will investigate the plasmacytoma route, although I agree it’s probably a long shot given that she started with fairly severe myalgias resembling something more like polymyalgia than neuritis.
I’ve been given different advice regarding starting corticosteroids. Any data supporting one regimen over another? IV solumedrol vs. p.o. prednisone. What is considered an adequate dose and length for initial trial? A neuro colleague recommended 60mg/day of prednisone until there is improvement then consider tapering. Two others felt that we shouldn’t start steroids until it was clear that the IG was not doing the job, perhaps after a total of 8 weeks of IVIG every two weeks.
Anyway, we are hopeful that she will improve soon and I really am happy to have found you all.