I have to differ with Robocar in that I have never been treated with immunosuppressants. There are also many people in the Facebook MG groups on IVIG and Mestinon alone. My neuro and my hem/onc doc who does the IVIG at a Cancer Center are both adamant that IVIG is far safer than immunosuppressants and are avoiding them. I have been on IVIG for 2 1/2 years. My neuro said the reason why most MG patients don't go on IVIG first is because of the prohibitive cost and the difficulty in getting insurance approval long term.

With all that said, I hope to avoid immunosuppressants forever because the side effects are irreversible and can be life threatening. As hard as it is to have to spend 2 days every other week at a Cancer Center for the rest of my life, I choose that.

As for your question, I am in the exact same boat as you with the scheduling. I have been on every two weeks for 2 1/2 years. I did improve and went down to every 3 weeks and did just fine on that for a while, but I went into crisis a month ago. There were a few factors; I skipped a week of IVIG, had a tragic death in the family, and overdid it a bit at Christmas. Since the crisis, I've been back to every two weeks. It will be a little bit before I try and space it out to every three again, but I'll do it.

A couple questions and hints; when I went down to every three weeks, my hem/onc doc increased the dosage a bit to help carry me through. And above all else, I HIGHLY RECOMMEND getting a port! I went through a year of those painful sticks, blown veins, and all the bruises that would sometimes still be there two weeks later when I went back...getting a port was the best thing I ever did! No more lines or IVs hanging out of your hands or arms, it saves your veins, little to no pain with your infusions, it's dreamy!