First off WELCOME Kate!
And, secondly, you are very lucky to have a doc willing to try IVIG [I]before real damage is done[I][/I][/I]! Many doctors are only willing to try this as a very last resort! I’ve even had one neuro dept head claim that I can’t be receiving IVIG, because I would have to be in a wheelchair to qualify! Not so!
And I sort of provoked him by stating ‘Have you ever thought that I’m NOT in a wheelchair because of the IVIG? Your doctor is way ahead of many others.
IVIG is one long standing treatment that has been used for over 30 years for many medical conditions. However only one brand has been recently approved for use on CIDP. While many insurances can and do cover it? Risks are no better or worse than the long term use of pill-type medications such as Prednisone.
I went thru what you are going thru rite now several years ago and I concluded that in many ways the pre-testing for certain IG components in your blood can ‘match’ you to one brand or another as some of us aren’t ‘compatable’ with some brands. Do keep in mind that there’s a 50-60% chance it will work-I took that chance and am soo much better for it!
I’ve also found that yes, there are risks…and sometimes side effects, but that the results have always been worth the risks! Go web up the ‘full prescribing information’ on the more common brands used: Gammunex an Gammagard and read all of the fine print. IN the end? It’s no different -risk-wise [IF prepared and infused properly] than having dental surgery [same thing? IF done properly]. Just learn as much as you can about HOW infusions should be done and give it a try. To me? IVIG is a processed blood product – and you really can’t get much more organic than that in the pharmacy world.
Talk to your doctor about reactions, and the doctor should be able to pave the way insurance wise to make things easier. And, it can take a while, depending on your insurance too. Read lots of past posts here and learn about the ‘veterans’ and about others who are new to it all as well. Just never ever be shy about asking questions-and right away.. if you get a headache, spots before your eyes, flu-like issues and other things outlined in the pres. info. Pre-medication such as tylenol and benedryl help avoid these problems a LOT! Also, prepare before infusions by drinking LOTS of water. As if it’s going out of style. I usually start by seriously hydrating about two days before my infusions.
It’s a whole strange experience at first? But you can meet some wonderful people who are in similar circumstances and it’s really comforting to know there are real humans who are similar to you! Once the novelty wear off tho? Bring a good book and prepare for some serious napping!
Don’t hesitate or be afraid to ask questions of your doctor, the infusion staffs or from folks here. I’ll be crossing my fingers until I find out how things really went! Take care!