Redchipster? I gotta agree with GAVol….

January 14, 2010 at 8:35 pm

Too often, neuros don’t prescribe enough IVIG to knock things back into shape! And I also agree that Gammunex has worked better for me than other brands, because of it’s soluables in it. Do keep in mind that this site elsewhere offers insights as to what each IG product contains and they are ‘different’ in secret proprietary ways. They are all similar, as they are ‘processed blood products’? But after that, how they are treated is often quite different.
Solumedrol wasn’t an option for me due to other medical issues and getting the right dosage and frequency of IVIG and the right brand makes a BIG world of difference.
That the company which makes Gammunex [Talecris] went out on a limb to MAKE IVIG a legitimate treatment for CIDP and GBS is an incredible feat. Prior to that, most clinical trials for IVIG had been for other medical problems such as MS or Parkinsons…with mixed results. Since the product had been used off label for well over 20 years and has been ‘accepted practice’ by most insurance companies, the costs and then cost containments have since become BIG issues! Making this legit was super for all of us! And Good work Redchipster in digging that up to present to your doc. Many docs in practice are behind the times as to what’s new in treatments. To keep up on things could keep them from ‘practicing’! You were one excellent self-advocate and likely in the long term will help others with that work!
Next aspect you mite have to deal with is to KEEP A LOG! About how much better you feel…cite specifics: such as walking longer or standing more stable or even less pain! Why? Because the doc has to JUSTIFY that it’s a working therapy for you! I know I felt ALL three after my second start-up infusion! I got some of my life back!!!!
Congratulations for being the best advocate that you needed to be!