IVIG Replacement Therapy Was Rough, but Worth It

Those of us with myasthenia gravis have several treatment options to help us get our lives back on track.

My road to remission consisted of prednisone, Mestinon (pyridostigmine), CellCept (mycophenolate mofetil), intravenous immunoglobulin (IVIG) replacement therapy, and a thymectomy.

Of those, the first three are pills, and whether I took them whole or crushed, I understood how they worked. The thymectomy, while scary, was also easy to understand. As long as they knocked me out for it, I was fine. However, the IVIG treatment was new to me. It also ended up being one of the roughest treatments I received.

My neurologist quickly recommended IVIG therapy after only one appointment with him. Because I was still firmly in denial about my diagnosis at the time, I thought he was overreacting. So what if I could barely eat or drink? Is it such a big deal that the left side of my face looks like it’s melting? Calm down, Doc!

Luckily, I didn’t put up a fight and agreed to enter the hospital for my first round of IVIG therapy.

Unlike the other treatments I mentioned, IVIG therapy is delivered intravenously. During the procedure, the patient is hooked up to an IV for about five hours. Healthy antibodies are introduced into the bloodstream to stop problematic antibodies from causing muscle weakness.

To explain it in another way, people with MG have “villainous” antibodies, while IVIG treatments introduce the “hero” antibodies to stop the villains from attacking.

While the length of treatment varies from patient to patient, my plan was to receive five treatments over five days, lasting five hours each day.

My neurologist explained that while I could receive the therapy as an outpatient procedure, I needed to be observed in case I had a bad reaction to it. This meant that I landed a five-day stay at the hospital, which is no one’s favorite place. I brought some books, planned out my television schedule, and prepared for a smooth stay. What could go wrong?

My first IVIG treatment was incredibly easy. I felt no side effects and only had to deal with the boredom of remaining still while hooked up to the IV. Day two was the same. Unfortunately, my lucky streak ended there.

The night after my third dose, I started to feel a bit nauseous. My first thought was to blame it on my hospital dinner of beef, rice, and beans, which sounded like a good idea at the time. Maybe I should’ve gone for the turkey sandwich instead. Nevertheless, nausea started to creep up my throat and down into my chest. The IVIG treatment was finally starting to make its presence known in my body.

I won’t get graphic with the details, but believe me when I say that the side effects were rough. I was extremely nauseous for the rest of the treatment. I vowed never to eat rice and beans again. (OK, I had some about two weeks after I went home!)

Yet, while IVIG therapy put my body through the wringer, it eventually made me feel so much better. It allowed me to gather strength while giving my meds time to start working. If my symptoms start to worsen, I would be willing to vomit 100 more times to feel better again. But I would probably recommend skipping the rice and beans.

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