Why it’s important to be informed about drug interactions and LEMS

A recent study of acetaminophen and Firdapse is a good example

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by Lori Dunham |

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When our daughter Grace was facing a rare disease diagnosis three years ago, we had no idea how significantly Lambert-Eaton myasthenic syndrome (LEMS) would affect her life. But we knew things had already been changing for her.

Grace could no longer participate in hobbies and other leisure activities because LEMS had taken a serious toll on her health. Even the way she was educated needed to be modified. Today, I’m still learning information that could significantly alter the way she lives.

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I’m grateful for the wealth of information that helps us make informed decisions, but I found some recent news a bit jarring. In late May, Lambert-Eaton News published an article noting that people with LEMS “should be cautious when taking Firdapse (amifampridine) together with acetaminophen … to avoid unwanted interactions that could compromise how safe Firdapse is and how well it works, a study in rats suggests.”

My daughter doesn’t take acetaminophen regularly, so that’s not what worries me. Rather, I’m perplexed by the thought that a common over-the-counter medication could have a negative chemical interaction with the most important medication Grace takes each day. And I had no idea.

Grace is prescribed a large dose of acetaminophen before receiving Rituxan (rituximab) infusions every six months. So now I’m wondering if that has been affecting her in any way.

This news isn’t the first time I’ve encountered adverse drug interactions mentioned in the context of LEMS. As a Lambert-Eaton News resource article points out, for patients with LEMS and myasthenia gravis, “Botox treatments can be very dangerous” because they can exacerbate symptoms. That warning made sense to me, and my daughter can certainly live without Botox (botulinum toxin).

Even while scrolling through a list of medications people with LEMS should avoid, I thought it made sense. These include antibiotics and beta blockers, among others.

The recent study about acetaminophen is a good reminder to be continuously vigilant when introducing any medications to my daughter’s treatment regimen.

It’s reaffirmed my interest in educating myself to keep up to date with ongoing trials and other research.


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 myasthenic syndrome.

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