Our Daughter Has Stopped IVIG Treatment

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by Lori Dunham |

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One of the first treatments offered to our daughter Grace, now 16, after she was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) was intravenous immunoglobulin (IVIG). Every three or four weeks we would head down to Wolfson Children’s Hospital in Jacksonville, Florida, for her infusion.

The hospital always did a great job making Grace feel comfortable as nurses gently inserted her IV. They would begin by giving her Benadryl and Tylenol. Her infusion usually lasted about five or six hours over two consecutive days.

Initially she benefited greatly from this treatment. It enabled her to walk without assistance, and she had more energy. Her slurring of speech also improved. As months passed, however, her veins began to show wear and tear.

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Grace’s neurologist offered a number of solutions to this problem. First and foremost was a port, which would eliminate the need for monthly IVs. I hesitated to do this simply because of the port’s invasive nature.

He also suggested trying Rituxan (rituximab), an immunosuppressant also administered through an IV, but given only once every six months. Since Grace still had a lot of room to improve her symptoms, we decided to give this a try.

According to Grace’s doctors, most people don’t do IVIG and Rituxan simultaneously. They usually choose one or the other. But because patients can need three Rituxan treatments or more to feel the full effects, her doctors decided to allow her treatments to overlap a few months.

Grace had wonderful success with Rituxan and immediately began to notice positive changes in strength, stamina, and stability. During this time we continued with monthly IVIG. Although we did not see visible signs of increased strength from the IVIG, Grace continued to feel she needed it. It was the first treatment that made her feel good, so she had a hard time letting it go.

Finally, after about three months of doing IVIG and a round of Rituxan, Grace said she could go without IVIG. It was bittersweet to let it go because we loved the many benefits of it. Flooding her body with good antibodies was always so encouraging. Her skin was flawless and her hair silky and shiny. She looked healthy again, and much of that was from IVIG. I also appreciated that IVIG would be a good source of COVID-19 antibodies.

But for Grace, Rituxan definitely made a bigger difference in alleviating her LEMS symptoms. Overall, I am glad to have those two days a month back for her school schedule and a treatment plan that works well for her. I hope all people who have LEMS find the best treatment option for their particular situation.

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.


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