Why we’ve decided to decrease my daughter’s Mestinon dosage

Note: This column describes the experiences of the author’s daughter with Mestinon (pyridostigmine). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

A lot can happen in four years.

In the United States, students usually get a high school diploma after four years. Most undergraduate degrees take four years to complete. Our president serves a four-year term. At times, four years can seem like a lifetime. At others, it feels like the years have flown by.

For our family, it has been a challenging four years since our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS). It has taken that long to regain her strength and mobility.

Today, she’s doing great. Grace is finishing her freshman year of college, holds a part-time job, and has an active social life. Her mobility isn’t at 100%, but she’s doing better than we thought she’d ever do. We are confident she can live an independent life.

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After a LEMS diagnosis, good medication management is key

Since stabilizing her health, Grace’s neurologist has occasionally suggested she try to come off Mestinon (pyridostigmine). Currently, Grace takes 180 mg of Mestinon as well as 70 mg of Firdapse (amifampridine) and 150 mg of Imuran (azathioprine) every day.

I’d love to see Grace be able to minimize her daily medication intake. I’m leery, though, because I don’t want to see my daughter’s health decline. It has taken us too long to get here.

Mestinon was the first medication Grace started after getting sick. Initially, it had minimal impact on her mobility. However, when she began to take it in conjunction with Firdapse, it helped to alleviate her LEMS symptoms.

Hitting some speed bumps

Recently, though, we’ve had trouble refilling Grace’s prescription for Mestinon. Three separate pharmacies have told me they are out of stock. I get very anxious when we have trouble accessing any of her medications. It rarely happens, but when it does, I’m reminded of how dependent we are on her medicine.

This interruption in access to Mestinon has forced us to revisit the possibility of pulling it from Grace’s treatment plan. Recently, we presented the problem to Grace, and after much conversation, she decided to see how she feels without it.

One reason she wants to try going off the medication is because she’s experienced significant side effects from Mestinon. Her gastrointestinal issues regularly interrupt her day. In addition, we recently learned that Grace is lactose intolerant, which poses a problem because Mestinon contains lactose.

So we will attempt to slowly decrease her Mestinon dosage, under her doctor’s supervision. (Always consult a medical professional before stopping or changing a medication.) I’d still like to get the prescription filled, though, in the event that the taper doesn’t go well.

We are so encouraged to see how far Grace has come in four years. The fact that we’re even thinking about decreasing her daily medication dosage is amazing.

Today, I am excited for the next four years of Grace’s life. We stay hopeful that time is on our side.

Do you take Mestinon? If you’ve experienced any side effects, how do you manage them? 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.