After a LEMS diagnosis, good medication management is key
With multiple medications, organization and backup plans are important
Once a month, Anovo pharmacy calls to refill my daughter Grace’s prescription of Firdapse (amifampridine). The conversation doesn’t vary from month to month. First, they’ll inform me the call is being recorded. Next, they’ll confirm some personal information. Finally, they’ll ask if Grace has missed a dose since her last order.
I always find this question curious, because in the four years since Grace, who is 18, was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS), she’s never missed a dose. Not only is she hypervigilant about it, but also her body won’t allow her to forget. She always grows weaker when it’s time to take her next dose.
I’ll admit that managing her pills hasn’t always been easy. As with many LEMS patients, Grace takes multiple medications, several times a day. She currently takes 20 mg of Firdapse three times a day; 60 mg of Mestinon (pyridostigmine) three times a day; and 50 mg of Imuran (azathioprine) three times a day.
Devising a plan
Grace was just 15 years old when she was diagnosed. At that age, she didn’t regularly carry a purse, so we had to figure out where she would keep her pills during the day. Should she keep them in her pocket? In a backpack?
Some days it was hard to predict how long she would be away from home. We needed to figure out if she had enough pills with her in case we stayed out later than anticipated.
One day at school, Grace dropped a pill while taking it out of her pillbox. After a lengthy search, no one could find it. She called me in a panic because she didn’t have an extra one, and she didn’t think she’d be able to get through the school day without it. So I drove 35 minutes back to her school to give her another dose.
Scenarios like this forced me to develop strategies to help her manage the pills.
Firstly, Grace didn’t like traditional pillboxes because she said they looked like “something her nana would carry.” So we looked for fun-looking pillboxes.
Next, we came up with a plan to have extra medication on hand anytime she left the house. Usually, we made sure she had at least one extra dose of each medication in case she was out longer than expected.
Finally, we placed a dose of medication in strategic places for emergency situations, such as in the glove compartment of both of our cars. I also keep a dose in my purse, and another one in Grace’s school bag.
There are some problems with doing this, though. The medication is extremely expensive, and I certainly don’t want to waste any doses or forget where we put them. Also, for those who are treated with Ruzurgi (amifampridine), I know it has to be refrigerated. That makes it impossible to store in a car or a backpack for extended periods of time.
Overall, these steps helped ensure that Grace would consistently have the medication she needs. The older she gets, the more she manages her pills without my help. She now knows what she needs and plans accordingly.
How do you manage your daily medications? What has worked for you? 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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Ginny Boynton
Hi Lori,
Actually, Ruzurgi and Firdapse have the exact same temperature range on the boxes in which their medicine arrives. Though Catalyst claims that the added phosphate salt makes its medicine shelf stable and is therefore a benefit to using it over Ruzurgi, it is an inaccurate claim. In fact, I have placed my 3,4 DAP (late known as Ruzurgi) in a drawer for the past 20+ years after initially obsessively carrying a container in which I could keep it cooled until I realized it made absolutely no difference.
Ginny
Lori Dunham
Hi Ginny. Glad to see you are able to comment. Interesting on the temperature range and that ruzurgi does not actually need to be refrigerated. That is much more convenient. I know when Grace was on ruzurgi it was very difficult taking ruzurgi to school when it needed to stay cool. Good information, thanks for sharing.