Weighing the Pros and Cons of Taking Another Immunosuppressant

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by Lori Dunham |

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We live only two hours from “The Happiest Place on Earth,” so it’s no surprise that we used to frequent Disney World.

Each year, my children would push me to ride bigger and scarier rides. I’m more of a Tilt-A-Whirl kind of girl, but my kids love rides like The Twilight Zone Tower of Terror and the Rock ‘n’ Roller Coaster Starring Aerosmith. I must admit that these rides stretch my limits. I usually power through, and afterward, I load up on Tylenol and a good neck massage.

Oftentimes, this rare disease journey feels similar to the crazy rides at Disney. We never know what is around the next bend and rarely feel prepared for the next big drop up ahead. Yet, we know it’s inevitable. I would prefer to get off this ride and head over to the lazy river, where I can see what lies ahead and exit gently when the waves get too rough.

When we started this journey with our daughter Grace, I hoped someone would tell me that she would get better. I prayed for restoration of activity in her life. I wanted her restored to her previous self — healthy and able to do the things teenagers do. But Lambert-Eaton myasthenic syndrome (LEMS) steals a lot.

There are still many things Grace can’t do. She can’t go up or down steps. She can’t run or play sports like she used to. She is unable to walk long distances. But she is so much better than she was.

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It has been well over two years since Grace was diagnosed with LEMS. I still can’t believe how far she has come with the right treatment plan. For those just beginning this journey, hang in there. There is hope for more — more movement, more mobility, more improvement.

Yet, just as we’ve reached a comfortable plateau, Grace’s rheumatologist has suggested adding an oral immunosuppressant, azathioprine. Grace is already on Ruzurgi (amifampridine), Mestinon (pyridostigmine), Rituxan (rituximab) infusions, and intravenous immunoglobulin therapy. Is it best to add another immunosuppressant, given continuing COVID-19 concerns? We just don’t know.

I appreciate the doctor wanting to get Grace to a place of greater mobility, but I hesitate to stack on yet another pill. Azathioprine is commonly prescribed for LEMS patients, but it comes with side effects and risks, including anemia and an increased susceptibility to infections. It could also increase Grace’s risk of developing lymphoma. However, if it works properly, it has the potential to eliminate more of her daily LEMS symptoms.

Our job as parents is to weigh the pros and cons and determine what is best for Grace at this time. So, we hold on tightly as we continue on this roller coaster ride. We’ll continue to make the best decisions, not only for Grace’s immediate health, but also for her long-term health and longevity.

Have you used azathioprine? What has your experience been? Please share in the comments below.


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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