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Old 05-23-2007, 10:13 PM
dahlek dahlek is offline
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Join Date: Aug 2006
Location: metro DC suburbs
Posts: 2,576
15 yr Member
dahlek dahlek is offline
Magnate
 
Join Date: Aug 2006
Location: metro DC suburbs
Posts: 2,576
15 yr Member
Default Melody, I have a couple of questions?

You mention that Alan just had Octagam for his infusions this month.
Could you check back on your old notes and see what he was given during prior infusions? Did you actually get a prescription that specified a particular BRAND of IVIG? This all is important [aside from keeping Alan Happy, Healthy and WHOLE].
I had one heck of a bad experience with an infusion center switching brands and not letting anyone know well over a year ago. The label on the IG bags that were given to me [in a hospital infusion clinic, no less] at first said the proper 'brand' then changed to 'Brand or equivalent'...HEY there's no GENERIC brand X for this stuff. I kept getting mild reactions...those killer headaches akin or full brothers/sisters to migraines [not just flu-like reactions .. really blinding headaches] Turns out when I did get one serious reaction I went to these boards and 'searched the dickens out of what all there could be found on IVIG'! Boy did I learn lots, and I learned lots of problems about what is an expensive and supposedly super-regulated medication/blood product=IVIG and how it gets into US the patients!
First off-#1 IF the 'supplier', meaning the home service and/or pharmacy provides a substitute [according to gov. regs by the FDA] Your Doc has to be informed in writing within 10 days, doc then has to notify YOU of the substitution again w/in another 10 days... I found out that for a period AFTER the infusion in which I'd a reaction I had five different brands substituted during a 6 month period...no notification was ever made to either the doc or myself. No wonder I began to wonder if the stuff was working or not...I really wasn't getting the SAME stuff on a regular basis. To have a pharmacy substitue another brand is INEXCUSABLE as there are trace components in the different brands that one particular patient may not be able to tolerate and that's why all the special testing prior to OK'ing IVIG is needed ....PHARMACISTS are trained in how to safely prepare IVIG, they are not usually educated about the subtleties of the different brands/types of IVIG. What your IV nurse did, was well, quick and dirty, from a practical viewpoint. BUT it wasn't safe preparation, procedure or process by FEDERAL REGULATIONS at all. The odds of Alan getting sick or worse from what they did are small, but those Fed REGS are very very specific in all points to that of the actual administration and ARE NOT ACCEPTABLE at all!
Continued on part 2?
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