Can anyone explain the basics of IVIG to me? I got a call being told I am booked for 3 days starting next Monday and have no info on this besides what I have googled, so any info for people that have had it would be great.

I have been getting max dose permitted every 3 weeks for 3 years and think it is very very helpful. I also take prednisone, cellcept, mestinon/pyridostigmine.

After my first dose it was switched to 2 days. Initially I was receiving Octagam 5% dose took about 10+ hours each 2 days but now Gammagard 10% so same dose only takes 4 hours 45 minutes. After about 6 months my veins were shot (it is very thick product) and I had a port put in my chest...best thing ever...took awhile to get used to but now don't even notice it.

I suggest avoid caffeine, drink extra water and see how you respond as everyone is different. All in all I think very good thing for my MG!

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.

Hi Meech

There is a fairly long and fairly technical explanation of IVIG therapy here; http://emedicine.medscape.com/article/210367-overview . Note that you might have to register with Medscape, which is free, to see the whole article.

My understanding is that IVIG therapy does not have official (FDA) approval for management of myasthenia gravis though there is evidence that it can be effective; http://www.ncbi.nlm.nih.gov/pubmed/24399309 .

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.

Thank you both. I am actually in Canada on provincial coverage and IVIG isn't off label here for mg for severe exacerbations or crises, but it is not recommended for maintenance treatment. I called the clinic where I am to go and they said I can take all my regular meds, be there early for blood work ( I think something about cross typing?) and they think it will take about 2 1/2 hours.

I'm very glad to know they monitor you closely. I don't alway have luck with new meds/treatments, I tend to have a lot of side effects.