Some docs can be conservative, others cautious…

February 12, 2010 at 11:09 pm

I kind of like GaryD’s math, as that is one aspect I’m not good at? But the cautious input of IG is essential to determining a] IF you can tolerate it w/o some very unpleasant side effects; b] assess if this dose works; and lastly The costs are dear – HE has to justify it all to the insurance co and I understand that paperwork is lengthy…
You should keep short notes at hand to record things like: IF and when during an infusion you mite seem to get a headache?; Do you really HYDRATE well before infusions? I dose myself w/a half 16oz bottle of gatorade each day and drink water till I slosh almost… then? During infusions…guess what? Gotta GO! Awkward but necessary aspects. LASTLY, record! Minute by minute IF you feel anything GOOD from the infusions! For me? Aside from the pre-med semi-slumber? My ankles relax! Totally. Each month about an hour into the infusion? That happens and it is a joy. The muscles there which have been working overtime [and those nerves?] RELAX. Drugs don’t do this? Only IG! Go figure.
I agree with others, but if you hydrate REALLY well, your kidneys shouldn’t be too much of a problem for a while? But you’ll have to be sloshing for at least the 10-15 prime days after infusions when they are doing their work and essentially killing off the mutant immune cells…they gotta go somewhere and out.
Just keep short and sweet your notes to your doc about ‘good or bad’ things of the infusions. YOU MUST BE HONEST! But, even admit fears about not getting it…if you suspect your doc is waffeling. In my case? I was in a hospital who substituted the PRESCRIBED brand with four other brands over a 6 month period…I was ready to give up until I found another venue. WheW!
Keep faith and hope that’s what we got to go on. That and a lot of community knowledge and experiences!