Best of luck with all of that -I know it has to feel like a lot in the moment. It almost helps to get things done quickly so as not to overthink and stress. Prioritize taking care of yourself and resting, it helps with everything!

Thank you for your perspective. I am hoping to be stable enough on my gMG meds in Nov to schedule the surgery. I already had the pulmonary testing and know I have to redo the CTScan. My thymoma is pretty small and the surgeon doesn’t think it’s malignant. So that’s good. The waiting is killing me though. Just want to get the surgery over so I can start healing. I also have a back surgery for an unrelated issue waiting in the wings. Just happened to be found when they were trying to figure out my issues. Thinking not for another year on that.

I had just 2 days of infusion in prep for the surgery - and my neurologist wanted at least 2 weeks, so it had time to work. My tumor was very large, and since its level of malignancy was unknown, my surgeon wanted it out ASAP. From discovery to removal was 6 weeks, and having been in good health previously, I had a lot of testing prior to surgery to be sure I could tolerate it. Since then, I have been hospitalized and received inpatient infusion for 5 days during a significant flare. I have been on IVIG ever since - two days every four weeks for the last 2 years. I tolerate it really well. You are generally given pre-meds to minimize side effects from receiving the infusions. Usually a steroid, benadryl, and tylenol. Headaches are pretty common I think. There are also multiple "brands" of IVIG and some people have better luck with one brand vs another (I have read and my infusions nurse has had experience with that as well). The reason you get the infusions back-to-back is a dosing issue - getting the dose you need, but spreading it out enough, and infusing slow enough for tolerance.

Hi CarolCossa, You stated you received your IVIG infusions 2 weeks prior to surgery but how many days of infusions did you have? I will have to sit for 4 days of infusions but am not sure how far out from surgery I can get them. I am hoping they can be spread out but my doctor also said something about doing them as an inpatient. Obviously will get clarification once a date is set 😀

HI Sherry695. I had my thymoma removed about 2 years ago (at age 54), shortly after my MG diagnosis. I received IVIG about 2 weeks prior to surgery, as well having started on pyridostigmine, prednisone and cellcept. I was in pretty decent physical shape and my surgeon was able to complete the surgery robotically - so no open chest. I think both allowed me to have a smooth recovery. Best of luck for a smooth surgery.