Weighing the Pros and Cons of Mestinon to Treat LEMS Symptoms
A rare disease diagnosis comes with many challenges. One significant challenge is the statistic that, according to some estimates, 90% of rare diseases don’t have a treatment approved by the U.S. Food and Drug Administration. Thankfully, the Lambert-Eaton myasthenic syndrome (LEMS) community is blessed to have FDA-approved treatments available, along with multiple off-label medications and treatments.
One such off-label treatment is Mestinon (pyridostigmine), to treat muscle weakness. However, I haven’t felt equipped to write about Mestinon previously. It’s not because my 17-year-old daughter, Grace, who was diagnosed with LEMS at the age of 14, doesn’t take it; she does. I chose not to write about Mestinon before because it’s a bit of a mystery to me.
Many patients who take it seem to have a lot of side effects. Others may have none. Our story is somewhere in the middle.
Some of the more common side effects for Mestinon are diarrhea, abdominal pain, and nausea. Grace occasionally experienced abdominal pain, and for a time had diarrhea, after taking it.
Originally, Grace’s neuromuscular specialist thought she had myasthenia gravis (MG). Mestinon is often the first medication prescribed for MG patients, so he sent us home with a prescription.
At first, Grace showed mild progress on Mestinon. She seemed to feel a bit better and had a tad more energy. But it did nothing to help her muscle weakness. Then, when she was actually diagnosed with LEMS, they prescribed Ruzurgi (amifampridine) along with Mestinon. (Amifampridine also is sold under the brand name Firdapse.)
According to many LEMS patients, it is common to prescribe both Mestinon and amifampridine. Grace notices that the effects of amifampridine last longer when she takes Mestinon. Additionally, she takes Mestinon extended-release tablets in the evening, which helps her have an easier morning.
However, it’s been very difficult for me to examine Mestinon’s effectiveness versus its side effects. Firstly, I’m not the one taking the medication, so I can’t say how the medication works. My opinion is based on observations, so I don’t always know which medication to attribute improvements to.
Secondly, my daughter is now 17. She began taking Mestinon at 14. I can assure you that a teenager does not have a lot of patience for her parents asking questions about her bowel movements.
As Grace got older and became more open to discussing the varying symptoms she was having, we have learned how to make Mestinon work better for her. The most significant improvement was ensuring that she ate before taking it. This helped alleviate stomach pains and diarrhea. If she took it on an empty stomach, she was sure to have increased side effects.
Some studies have found Mestinon is not always advantageous when taken along with amifampridine. Our experience has been that it’s worth taking as long as we manage the side effects and keep them to a minimum. We attempted to take Grace off Mestinon at one point, and she did feel a dip in strength.
So, for now, we keep doing what we’re doing. We do whatever it takes to get her to maximum strength and mobility. Of course, I would love it if she didn’t have to take so much medication, but it is worth it if it means a better quality of life.
As always, consult your doctors before selecting or switching any medications. These are our experiences, which may differ from others.
Do you take Mestinon? If so, how do you manage its side effects? 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.