IVIG Replacement Therapy Was Rough, but Worth It

Michelle Gonzaba avatar

by Michelle Gonzaba |

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Strength in Weakness column by Michelle Gonzaba / grief

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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Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Comments

Ari Maayan avatar

Ari Maayan

I’m sorry to hear about your response to the IV/IG. My MG first showed up exactly 5 years ago. It came on with all of the symptoms of a full blown stroke (inability to walk or use my arms, speech so slurred no one could understand a word I said, drooping left side of my face, inability to chew or swallow, complete double vision). I don’t understand why this website asks if we have ocular or generalized MG. I have both. It took me nearly a month to get a diagnosis of MG thanks to the incompetence of the VA in Las Vegas. Once I had my diagnosis I was put on mestinon almost immediately and all the symptoms soon abated. However in September of 2018, I had a myasthenic crisis and was taken by ambulance to the nearest hospital. As they pulled up to the ER I went into full respiratory arrest. During the next 11 days in the hospital I was given IV/IG for four days. I pulled through. After that I was put on IV/IG every month. Recently my neurologist has cut me back to every other month. Fortunately for me I have not had any side effects from the treatment. In November of 2018 I had open heart surgery and my surgeon was savvy enough to put me on IV/IG during the surgery and continuing for 4 days. While he was in there he removed my thymus. I didn’t have a thymoma. Unfortunately the thymectomy wasn’t helpful for my MG. So I’m still on mestinon (60 mg X 4 times a day) and every other month on the IV/IG. So far so good. I have some symptoms that are just an annoyance but not serious enough to get me to accept an immunosuppressant drug. I hope that you tolerate your IV/IG well now. Good luck!!!

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Michelle Gonzaba avatar

Michelle Gonzaba

Hi Ari! Thank you for sharing your story. I'm so happy to hear that mestinon/IVIG are working well for you! Luckily when I had IVIG a second time around, I didn't experience any side effects. Thanks for reading and I wish you good luck as well!

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