I have lived with MG since 2010. After Mestinon and Imuran took over in 2011, I went into remission until 3 months ago when I crashed one week. My Neurologist put me in the hospital for a week of IV-IG treatments. They had no affect on my MG and three weeks later I was back in the hospital for 6 Plasma Exchange treatments. Half way trough the first treatment all my symptoms went away. I thought it was a miracle. One week later the symptoms came back. I am now back in the hospital under going more Plasma Exchange treatments. I should mention that I was taken off of Imuran in October because of bone marrow issues and put on Cell Cept. It takes 3 to 6 months for Cell Cept to take over so I will continue to get periodic Plasma Exchange treatments. The purpose of all this is that there are other treatments and medicines that can help you. Don't get discouraged that IV IG didn't work. Talk to your Neurologist about the other things I mentioned. Also, Cell Cept is expensive. The manufacturer, Genentech, has an income based program were you can qualify to get CellCept free. Google CellCept programs. There is also a program were you can get it for $65/month from most pharmacies. I hope tis as helped.

The first time I had IVIG, it was awful, my body didn't react well. They almost cancelled the 5 day treatment, after only two days.
I managed to make it through.. and the first 2 weeks or so after my treatment.. I felt like I had the flu. It didn't seem like it was helping either. Then finally I saw some improvements and it helped me maintain a semi normal life for awhile..
Give it a little more time, and continue with your mestinon. Hopefully you'll see some improvements soon!

I am due to have another round of IVIG within the next week. So we'll see how this one goes. I'm more prepared this time :) at least I hope. Haha.

IVIG work for me a few years, but gave me a blood clot in my lungs.

I have completed 3 , 5 day IVIG treatments in the past year. First none worked. The first round on day 3 supper strong headache and nausea but then went away by late evening early morning day 4. Second round , no help , third round no help. I didn't find any help for my symptoms until my neurologist and I hit on CellCept and mestinon. So by this and the other comments , you should seat down with your Neurologist and find a program that works for you. Unfortunately you are going to discover MG is a personal disease. You have to find the right mix of available treatments and personalize them to you. You will also find that unfortunately again , you will have to pick the side effects you can live with from the meds.

Don't despair. Plasma pheresis may be the next step, but give the IVIG a chance to work. I do not feel the effect of IVIG until several days after the treatment (peaks at 5 days). Pheresis works better for me but I have to go to the hospital and you also have to have a catheter put in your chest. I completely agree with the previous post.

Hi,

I've actually been told when I got IVIG (Privigen) that sometimes it takes multiple courses of treatment, let's day every 4 weeks to be effective. While I was allergic to Privigen and developed a mild case (painlevel 9) of meningitis, my doctor simply swapped to another brand (kiovig) which definitely had a stabilising effect. If onebrand doesn't work for you it could just be one of the ingredients that your body can't handle. I also met another patient that comesin every 3 months for IVIG that swears by it,but it also took a while to work.

Don't despair. There will be hard throwbacks. We will make it through, though!

Lea