Uugh! I think that I actually feel WORSE right before IVIG treatments than I did before I ever had IVIG. I don't remember feeling this bad before. But maybe that's the thing. I feel sooooo much better in the days & weeks following IVIG that the downward slide feels that much worse.
I would love to be able to shorten the period of time between treatments, and maybe I can after I've rejoined the civilian world in a few months. But right now, I've at least gotten the Nutty Neuro (or Absent Minded Neuro, as my Wife calls him) to bump up the amount of Gamunex SF to 80g/day for 3 days.
One good thing I have noticed is that I'm able to slowly lower the amount of Oxycontin I use after the IVIG. Not the Lyrica, but the Lyrica REALLY helps after treatment. Like my pain level is DOWN to 2-3 after IVIG. And that lasts for up to 3 and 1/2 weeks before it goes back up to 6-8 right before the next IVIG treatment.
Unfortunately, I can't seem to get my Primary Care Doctor to agree to give me a partial higher dose of oxycontin that I would only take during the last 1/2 to 1 week before treatment. No matter how much I'd like to think my Doctor trusts me, it's still narcotics we're talking about, and the overuse/abuse of these drugs by people who do not need them have caused the tight controls & restrictions.
Well, I only have less than 48 hours until my next IVIG treatment, so I only have to deal with the pain for a bit longer. I suppose I have very little to complain about, in the long and short of it, but it still HURTS!