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Despite it being my first year with myasthenia gravis, not knowing what was wrong with me and initially being misdiagnosed, I have been very lucky compared to some.
I didn’t have open chest surgery (transsternal thymectomy) to remove my thymus gland; instead, my surgeon did minimally invasive endoscopic surgery using small incisions and cameras. And, when my symptoms didn’t improve with traditional prescriptions: Cellcept and Mestinon. My neurologist referred me to a MG specialist only two hours away.
The specialist started me on prednisone and Intravenous Immunoglobulin (IV-IG). I did not react well on steroids and we had to significantly lower my dose of prednisone. While I love the effects of IV-IG, it is time consuming and expensive (insurance always gives me problems). Even on Cellcept, Mestinon, prednisone and IV-IG, my symptoms were still hard to control.
Two years ago, I tried Rituxan (Rituximab), usually just the words chemotherapy are enough to scare most people. I imagined my hair falling out, sick and vomiting. My doctor assured me that it was a mild form of chemo, designed to attack specific cells and that I would not lose my hair.
My first treatment took about 6 hours. I started having an itchy throat, running nose, and then full blown rash and puffy skin. They had to administer steroids and an antihistamine to counteract these side effects and then infuse the rest of the Rituxan slowly. After that, we always pre-medicated and future treatments only took 3 hours. I had four infusions total, given once a week for four weeks. The treatments did have me feeling sick, tired and out of breath. Yet, I always feel sick and tired, so it was just a really bad couple of months. I was expecting much worse, so I was relieved that it wasn’t.
That was in 2012 and Rituxan was not a common method of treatment for MG. My doctor gave me a recovery time of 12 months to determine the overall effect. He saw an improvement in what I would call the baseline of my symptoms; my bad days were not as bad. He was confident enough to start lowering my prednisone and initiate another round of Rituxan in 2013. This time, I pre-medicated with each treatment consisting of Tylenol, Benadryl, Pepcid and Decadron. With a better understanding of how the Rituxan would make me feel, this round breezed by. Our goal is to shorten my recovery in-between treatments to 6 months and wean me off prednisone and the IV-IG completely. In a future article in MG News, I will let you know how I am doing.
(Myasthenia gravis is a complex disease that affects each patient differently. No one treatment is right for every patient. You should always consult your physician for the very best way to treat your MG.)
