Finding the Right Treatment for My Daughter Made All the Difference
The calendar dictates my days. Most years, our family marks the passage of time with birthdays, Christmas, Easter, and a highly anticipated summer vacation. But since our daughter Grace, 16, was diagnosed with Lambert-Eaton myasthenic syndrome two years ago, our calendars have taken on a different rhythm.
Now the year passes quickly, marked by Rituxan (rituximab) infusions and until recently, monthly intravenous immunoglobulin (IVIG) infusions. As we approach Grace’s next Rituxan infusion, I’m taking stock of the various treatments we’ve tried in the past couple years.
Upon diagnosis, Grace’s rheumatologist prescribed Mestinon (pyridostigmine), which helped a little. But it wasn’t until he added Ruzurgi (amifampridine) that we saw any real difference in Grace.
From there, Grace’s neurologist suggested she go on a low dose of prednisone for a short time to regain some of her strength. This helped tremendously. Grace was visibly stronger and began gaining some needed weight. But we knew this was only a short-term treatment, and he created a plan to wean her off.
Finally, IVIG was prescribed. For Grace, the treatment involved a two-day outpatient infusion every three or four weeks. At first, we saw big improvements. Once Grace got over the initial lethargy from the infusion, she would feel a burst of energy and strength. This lasted about three weeks before her energy and stamina noticeably declined.
IVIG gave us hope. It enabled Grace to walk without falling or using a walker, and to resume many activities. She began to think about her goals for the future. IVIG was the turning point toward a new, workable normal.
However, the treatment had some downsides. It was very disruptive to her school schedule, since she had to miss two days of class every month. She went through cycles of energy and lethargy, and would often spend the week before an IVIG treatment at home, unable to participate in her usual activities.
This led Grace’s rheumatologist to prescribe the immunosuppressant Rituxan, which she receives once every six months. Rituxan was the catalyst for Grace’s biggest improvements in stamina, strength, and stability. She no longer experiences dips in energy, but feels consistently strong and stable on her feet.
Grace hasn’t experienced any significant side effects from Rituxan and seems to get stronger with each infusion. She no longer walks with a limp and is much steadier on her feet. Since starting Rituxan, Grace has been able to completely stop IVIG therapy and get back those two days a month.
Rituxan has played a critical role in helping Grace to live well. Finding the right treatment has been key to Grace’s improved health.
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 myasthenia syndrome.