I know what you mean-the frequency of people and Doc's are all over the place. I am getting it once a week but only because I can't handle the high dose of prednisone that they want to give me so it is a stop gap until I can slowly increase it. and yes the stuff is so expensive it's not even funny.I googled it once to buy outright and the quoted price was $10000 a dose. Terrible Highway robbery!

I sympathize with what you guys are saying: the doctors do seem to be all over the place, with different MG patients and different IVIG dosing schedules.

I have had weekly IVIG, since New Years 2013. (just this week: started to taper away from the weekly schedule.)

In my case? I believe IVIG - and Rituxan - is similar to a ''shotgun approach'' of therapy.

Rituxan: working to suppress my own antibodies, to keep them from attacking my ACh Receptors.
IVIG: the antibodies of thousands of donors being used, hopefully in enough numbers - to keep me functioning, and to ''crowd out'' my own harmful antibodies.

IVIG is not a perfect science. Even the MG Foundation states: ''... the exact mechanism of how IVIG works in successfully treating myasthenia gravis and other autoimmune disorders - is not entirely understood.''

Don't you imagine?
That in treating other medical conditions? IVIG was found to also be of help in treating MG symptoms. And that - prompted the deliberate use of IVIG, as a MG therapy.
- Ross

Ross I have been looking into IVIG and have found it is used for literally a hundred conditions, mostly autoimmune and in each case "they do not know the exact mechanism of action" Strangely that phrase is used for many medications, they just know it works through 'crowding out' the bad actors of the immune system and seems to affect the Fc receptors

Here is a good article:

http://onlinelibrary.wiley.com/doi/10.1111/j.1423-0410.2002.tb05269.x/abstract;jsessionid=AC8DFFFAC6BED49FFC69EAE4E6F20B6C.f01t01?deniedAccessCustomisedMessage=&userIsAuthenticated=false

For me my neuro has me taking a 5 day course of IVIG for 5 days every 8 weeks. It seems that the standard dosage per dosage cycle is 2 grams of IVIG per kilogram of body weight and a 'common' price for IVIG is about $100 per gram of IVIG. For those who want to figure out the cost, there are 2.2 kilograms per pound.

IVIG is the Igg (immune Gamma Globulin) part of the immune system and is just a refined version of the old "gamma globulin" shots they used to give in the muscle to help fight off a virus. The gamma globulin shots were popular in the years that polio was an issue and are still used to date and has been refined to a much more concentrated version called IVIG. They were often used as a immune booster shot.

Joe

I have done IVIG only once to push my MG back. I was very weak, had lost 30 lbs, and was collapsing. It brought me back long enough for my Cellcept to start helping.

Very effective for me. I would do it again.

I did one round as they say. Five 5-6hr infusions, having one every other day. Never since...

Good luck to you!
TJ

Thanks, Joe!

I had IVIG for about 16 months, once every 2 weeks to 4 weeks, depending on my symptoms.

-sherry

The first time I got IVIG I received it 4-5 days in a row then I think once a month, then dropped to every 2 weeks then weekly. I had them at home. I stopped IVIG after a little over a year as the dr did not think it was working any longer. I then started plex, which seems to work better for me.
Just last week added ritiuxan to the mix...
hugs,
Annette

I have ivig 3 days a week every three weeks.

i know some people have so many IVIGs, ...WOW..i just cant comprehend having so many. My 5 in a row IVIG HELPED SOMEWHAT. MY NEURO WAS DISAPPOINTED THAT IT REALLY DIDNT KICK-IN BIG TIME... WHEN I SEE MY NEURO NEXT TIME WE MAY CHANGE STRATEGY.. MAYBE Plasmapheresis OR A DIFFERENT KIND OF MEDICATION, I JUST DONT KNOW....I GUESS FINDING THE RIGHT MEDS. AND OR THERAPY IS SOMETIMES HARD TO DO WITH US SNOWFLAKES. HE WASNT REALLY THINKING THAT ANOTHER ROUND OF IVIG WOULD HELP THAT MUCH. SOMETIMES YOU JUST WANT TO THROW UP YOUR HANDS AND SCREAM......EVEN THOUGH I HAVE GOOD INSURANCE I DONT THINK I COULD AFFORD ANYMORE IVIGs ANYWAY. THANKS FOR YOUR INPUT GUYS....I THINK SO HIGHLY OF ALL OF YOU....I KNOW I CAN DEPEND ON ALL OF YOU TELLING ME HOW IT IS, WHAT WORKS FOR YOU, WHAT DOESNT, ETC.



BLESSINGS TO ALL.....TERRY