Quote:
Originally Posted by Meech
Thank you for the reply. How do they decide how fast to go with it? Do you just sit in a room for how ever long it takes? I was only told I was getting the 3 days so as far I know it isn't a regular thing. I haven't even talked to a doctor about it. I was also told to be to the clinic early on Monday because they need to do blood work first.
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I think each manufacturer has their own protocol in terms of rates but it usually starts very slow and ramps up at the predetermined rate (mine has five dose rates each day starting from 20 at 40 ml per hour, 40 at 80 per hour, 80 at 160 per hour, 160 at 200 per hour then 600 at 250 per hour for total of 900 each day taking about 5 hours). They monitor vitals at each rate change to make sure no bad reactions. Again, drink lots of water. They told me to take Benadryl and Tylenol but I get too sleepy with Benadryl to I prefer Allegra-D 24 hour and Aleve because I have liver toxicity to Tylenol. Of course, you should discuss with your own doctor.
I get mine IVIG at home (which I MUCH prefer over clinic setting) but that is determined by your insurance coverage.
It is true IVIG for MG is off-label use and I had to appeal with my first insurance company (Aetna) to get approved but for me personally it is the ONLY thing that really seems to keep me from exacerbation and I have a lot of other issues so that may be why it is approved for me because I do know it is incredibly expensive.
Also from my reading on here it seems some people with MG are helped by IVIG and some w/MG are not.