Karla, I had a IVIG when I had a breathing crisis. This cleaned my system up to allow the Predinsone to get me under control. Will

The cost of IVIG is something like $15,000 per treatment round, and it is good for 3-5 weeks usually. So, if you chose that route and do it monthly, it is very expensive either to you or your insurance company or whomever pays.

I chose to reserve it for crisis situations and instead use mestinon and prednisone to try to get MG under control that way. I haven't needed IVIG or PLEX (where your blood is removed, filtered and replaced--also quite expensive). Both the blood altering treatments do have their own problems too and are usually several days of many hours treatment--so quite inconvenient.

Most MG people do OK on mestinon and prednisone, however not everyone. My neuro said that by telling me the cost of prednisone and mestinon (very inexpensive in comparison) and of PLEX and IVIG, she was giving me the information to think about what my care would cost Medicare/insurance so I could make a decision that included the financial aspects of medicine too--something that was important in trying to address the costs of health care to society. She did think I should take IVIG when I was at my worst early on, but I was hesitant to mix the blood products of 1000s of individuals into my own "pristine system;-)

I also had the IVG when I went into a respiratory crisis. It truly worked but not long enough. I'm on 50mg of prednisone plus 240 mg a day of Mestinon and it doesn't feel enough now that I don't have the effects of the IVIG.

Not having control over my own body is making me crazy too!

Marcela

My neuro prepped me for Ivig in case my symptoms worsened before my thymectomy. I was on the edge with breathing and swallowing. Hopefully I won't meditate. I on 90 M every 3 hrs plus timespan at night. Good luck! And all the best.

I will be having my 4th round of IVIG Friday and Sunday. I get it for two days, at first it was one after the other day but now we are putting a day inbetween as the migraines were so bad for me. I started on the IVIG treatment fairly soon after my diagnosis...as I was just diagnosed in March of 2012. I was on Mestinon and Imuran but had to stop the Imuran as my white blood count kept dropping way too low. Cannot take prednisone as it messes up blood glucose levels. so right now, I am just on Mestinon. I am not sure what else to do...I see my doctor in a couple weeks and am in touch via the phone all the time...so we will see.

I have been doing IVIG since last December. I think as long as you are able, the drugs of choice are mestinon and prednisone. I can't do the high dose steroids and have been having issues. I do not think that IVIG is often considered unless you are having breathing/swallowing issues.

If it is to be IVIG, then you can expect a 4-5 day hospital admission for the loading dose infusions.

Karla I do not have experience with IVIG although yesterday my neuro suggested it may be a consideration for me as I'm experiencing a measurable decrease in strength since I saw her in June. I read somewhere today that IVIG is most effective in the first 18 months after diagnosis. I'm not sure how true this may or may not be.

Not a crazy question at all Karla. Thanks for posting. I'm trying to sort through the sea of info myself.
Best of luck.
Larissa