The LEMS treatment that has made all the difference for my daughter
Reflecting on Grace's improvement after 4 years of Rituxan infusions
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Note: This column describes the author’s own experiences with Rituxan (rituximab) and other medications. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.
I know fatigue — or so I thought. I’ve experienced sleepless nights with newborn babies, jet lag after flying 22 hours halfway across the world, and late nights awaiting news from my husband deployed to the Middle East during wartime.
But nothing prepared me for the kind of fatigue my daughter would experience after being diagnosed with Lambert-Eaton myasthenic syndrome (LEMS). Grace was 15 when her life drastically changed. In the span of three months, she went from riding her bike, playing basketball, and going on family hikes to using a wheelchair.
Muscle weakness hit her hard and fast. Grace’s weight plummeted from a mere 88 pounds to less than 70. Her legs would give out while she was walking, or, oftentimes, while she was just standing still. The doctor could no longer find her reflexes.
Within weeks of her first symptom, she couldn’t walk to the mailbox at the front of our driveway.
Not only was she fighting against muscle weakness, but she also struggled with chronic fatigue. There wasn’t much that was worth the effort of her leaving home. Navigating the long walk across the church campus to the sanctuary, meandering hallways and crowded corridors in her high school, and aisle after aisle in the grocery store became massive chores instead of quick errands. Her lack of energy prevented her from doing these everyday tasks.
We had high hopes that Firdapse (amifampridine) would be a game changer. It helped with her muscle weakness, but it did nothing for her chronic fatigue. We tried intravenous immunoglobulin replacement therapy, but again, she saw little benefit.
Taking a chance on Rituxan
Finally, after much debate, we tried Rituxan (rituximab) infusions. I was leery to compromise Grace’s immune system, but she lived with so many physical restrictions that we had to try it.
Her first infusion took nine hours. They ran it slowly and monitored her carefully throughout the day.
The first thing we noticed after that infusion was an increase in Grace’s energy. It wasn’t immediate, but she gradually regained enough energy to start participating in activities. She would occasionally accept an invitation to dinner or express a desire to see friends.
By her third infusion (a year and a half later), she was strong. She’d regained all the weight she had lost, her reflexes were returning, and her energy continued to increase.
Grace has been receiving Rituxan infusions every six months for the past four years. This treatment has made the biggest difference in her life. She has experienced very few side effects.
I am so grateful that medications and treatments are available to help alleviate LEMS symptoms. Of course, I want to see a day when Grace is freed of this disease, but until there is a cure, we will try whatever we can to improve her quality of life.
Note: Lambert-Eaton 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. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenic syndrome.
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