HYDRATION and other things?
Hydration is soo important…can’t under emphasize it enough.
I cheat [sort of] and down a small 10 oz gatorade the day before then drink water and other liquids till I slosh-almost. As the IG’s go to work and kill off the bad guys? They go thru the liver which is taxed enough as it is, so more liquids a couple of days before and a couple afterwards are useful to help flush stuff out. I’ve actually gained as much as five pounds w/the extra hydration. It goes away by the next time. Soo don’t be alarmed by that?
I’ve also been up and down the ‘menu’ for tylenol and benedryl – from 3-4 of one and 4-3 of the other to reverses and then downsizing. I’ve now found my ‘happiest rates’ and can get by on just 3 benedryls. I have to say that I usually get more side effects from the pre-meds than the IVIG for the most part!
I’ve never been offered Plasmapheresis yet. Guessing that the IVIG has worked well enough and PP is a ‘bit’ more invasive a procedure. Do keep that in mind as you sneak in time to research stuff.
When getting your IVIG? Your infusion nurse ‘should’ show you the bag, with your name and the med on the label!!! READ IT! It should state clearly the brand and quantity of IVIG you should be getting- Keep a record of that, please. I’d had to stop infusions at a nearb y hospital because they’d labelled the IG as ‘Brand X or ‘equivalent”….they were using the cheaper brands and charging my insurance for the higher priced IG. I’d thot I was going crazy at first because IT WASN’T WORKING! DUH? Once I’d gotten the actual listings? I’d only been given 2 daily doses out of fourteen of the correct brand. THAT IS ILLEGAL according to the FDA-they must notify you and your doc and did neither.
Yes, it gets complicated? Try looking up ‘IG Living’ a free magazine dealing with a lot of different IG products – sign in – it’s free, and you don’t get junk mail and you can look up back issues of the magazines articles to help you understand what IG is all about. How they ‘make it’ from last year was a good one! One thing I’ve gotten from this magazine is to know that I am NOT ALONE with just CIDP? Many others rely on it and other products as well.
I am hoping that you can find and ‘connect’ with a new neuro and SOONER rather than later! You need someone pulling for you NOW!
Don’t give up yet, ask sensible questions and don’t back down till you get answers! After all? It’s your LIFE, and your CARE at stake!
Keep us all up to date, please? I’d like to know that somethings’ going right!