Protocol

I’m reading posts, both new and archived, and something strikes me. Yes, there are accepted first line treatments, IVIg and steroids. But after that it seems that it becomes hit or miss, or something of an art instead of any strictly followed protocol. More like loosely followed protocol of further generally accepted medications and procedures (like plasmapheresis). A person’s outcome may be very dependent upon what their individual neuro believes “might” work based on his/her educated guess and in what order to administer things. And who knows how much unnecessary deterioration might take place if their neuro unintentionally “picks” the wrong course of action for them?

The best way I can describe it at the moment is that it’s comparable to pizza, LOL. Two restaurants can use the same general ingredients (cheese, pizza sauce and pizza dough crust) and yet the pizzas can come out tasting very different…..

I wonder, maybe additional loading doses of IVIg might do the trick for me, or maybe not, but I’m only going to be scheduled for maintenance doses once a month, so I might not ever find that out, whereas someone else might have a doctor who wants to try more of that then moving on to high-dose steroids so soon, as has happened in my case. Or someone else’s doctor might want to try plasma exchange before doing steroids. My doctor hasn’t even mentioned plasma exchange to me at this point. I still have to bring up the pulse steroids to him to see if I might be able to avoid the dreaded “moon face” and yet still have good efficacy. And then you also have the financial factor involved, too. I liken IVIg to “liquid gold”. Are further IVIg loading doses not being recommended for me because of expense? I mean, they all know I’m penniless and hoping medicaid will cover these expenses for me. I am a bit reluctant to be very vocal about things sometimes because I think I’m lucky I’m being treated at all under my circumstances.

I guess what I’m trying to say in a nutshell is that I find it disturbing that either enough is not known or enough is not coordinated between so many neuros as to REALLY know just all the right things and in what order to do for each CIDP patient in what specific circumstances. Such as how mine didn’t initially want to try the steroids on me because of my diabetes so he opted to go for the IVIg first instead.

Does this qualify as a rant? LOL Or maybe just a rude awakening to the world of a patient who has a rare disorder/orphan disease?

I imagine all of our neuros, standing side by side, each with a table of the same ingredients and they have to throw stuff up on a wall to see what might stick. Some neuros choose to throw their stuff up in different order, based on what they think their ingredient’s “stickyness factor” might be. Some neuros choose to cut their ingredients up before throwing them, like a shotgun approach, and so on and so forth…..