Take a good look at your infusion bag or bottle?

March 24, 2010 at 10:05 pm

Then be absolutely sure that the brand your neuro prescribed is what is on the bottle, or if a bag? It doesn’t say’ Brand name OR equivalent’ My hospital did that to me and gave me five different brands on differing days and all the other brands were cheaper and not as effective? But the hospital BILLED the insurance co for the richer stuff that I did not get… I contacted my US Senator and Area US House of Rep.s’ staffs and asked them who at the FDA had the regs on this stuff? Got it then and found out that the tracking system seems to be one way only…patients should be informed by their prescribing docs of changes but the pharmacies never bothered to inform the doc. Thus called the state’s medical licensing board about this issue and suddenly the infusion suites were ‘temporarily’ closed for about 3-4 days of intensive ‘re-training’. Can you imagine the fines? They and the pharamacy had not followed the very strict guidelines for the preparation, tracking and administration of IVIG. I was ready to give up on IVIG at that time until I found out all of this? Because the substitutes didn’t work and I got all sorts of reactions to them. Once you know all the laws about how IVIG is regulated? Then you must know almost as much [or more?] as how the IVIG is administered. After that? The infusion nurses would sidle up to me at the clinic and say ‘ we had to admit a patient who had a reaction to X, or Y or Z!’ They seemed grateful, [I was supposed to be anonomous in this process – but they knew me, I guess – but it saved and helped lots of folks even those w/o IVIG issues? But it’s mostly a cancer infusion center – Can you imagine?]
I found a good home nurse and pharmacy from another resource and am happy that I don’t have to drive home after IVIG and a slew of Benedryls…always scared me stupid on the way home.
Sometimes, your immune levels rise and the amount of IVIG may not be enough, ask your docs about this? Blood tests, new nerve conduction tests and maybe another ‘fun’ spinal’ could be on your menu. Docs should do this now and then anyhow? Even tho it costs insurance $?s because they have to continually justify your NEED for the IVIG THEN improvement from it. Good luck and super wishes for the near and far future! Wanting very hard for all here to have IMPROVEMENTS!