Why Dealing With All Of My MG Medicines Can Be Overwhelming

Taking medicine for myasthenia gravis (MG) can be so difficult. I have MG and I take prednisone and pyridostigmine (Mestinon) to treat it. But as so many of you know, MG drugs can lead to side effects. So, to tolerate my MG medicine, I have to take more drugs just to reduce the severity of the side effects I experience.

In this article I describe how I manage the side effects of MG drugs, along with everything I must accomplish to successfully navigate my medication challenges.

Managing the side effects of MG drugs

For pyridostigmine

My doctor prescribed sleeping pills. They help me fall asleep; they also help me go back to sleep after waking up in the middle of the night with the urge to urinate (a side effect of Mestinon.) When I told my neurologist about my insomnia issues and that no over-the-counter drugs were working, she prescribed trazodone. I only need it during flare-ups when I’m taking Mestinon.¹

I use Gas-X to help with the intestinal bloating and the feeling of needing to move my bowels after taking Mestinon. When I had asked my pharmacist what she recommended for bloating and gas, she suggested Gas-X because it had simethicone. I take the chewable type with each Mestinon dose.

For prednisone

Prednisone can increase the risk of osteoporosis. So, I take Fosamax, prescribed for reducing osteoporosis. I also take calcium supplements, upon my doctor's recommendation to help Fosamax's effectiveness.²

I take Vitamin D to enhance my immune system, which can be inhibited by prednisone. And prebiotics and probiotics to help my gut microbiome while taking a drug that can be hard on the stomach.²

Because I’m on a high level of prednisone, my doctor also prescribed an antibiotic which causes its own symptoms that I have to treat. Gas-X helps the bloating I experience with taking antibiotics. And my prebiotics and probiotics help repair the consequential microbiome damage in my gut.³

Keeping track of all my medicines

If you're like me, you've made this extensive list of all your medicines. You carry this with you "just in case" and give it to your doctors. And then you seem to be constantly updating this list as the dosages of the drugs keep changing in line with the changes in your MG symptoms. I find myself updating the list with changes to my dosages, or any drugs I've stopped taking.

Also, I have to be on top of any potentially risky drug-drug interactions by referencing online resources and/or MG cautionary drugs lists. Finally, I have to make sure I remember to reorder my refills in a timely manner, and also possibly deal with any pharmacy supply issues.

Scheduling doses and meals

Besides my medication dosing schedule, I also have to schedule when I can eat. Some of my medications require that I take them on an empty stomach. While others require me to take with some food. This can be challenging as I have bulbar-type MG and my swallowing can become very difficult during flare-ups.

I take Mestinon every 6 hours when I’m having flare-ups, and its effectiveness is mostly ramping up or down depending on where I am in each 6-hour cycle. This means my ability to easily swallow regular food may not happen at the sweet spot when Mestinon's effectiveness is at its peak. I’ve mitigated that by making daily total-nutrition smoothies, which I take during the higher part of one of the ramping periods.

I have Alexa, so I have a lot of daily reminders programmed in. I have a fitness watch and a phone that are both able to receive Alexa’s reminders when I’m not home, or out of earshot of Alexa. I have some of the most important drugs also listed on my Google calendar. For short-term drug regimens (e.g., for colds/flu meds, pain meds, and so on) I keep hand-written monitoring/check-off lists prominently displayed.

Constantly planning is exhausting

I end up spending so much time and effort in planning, and often changing, how I schedule dosing and eating, along with updating lists and monitoring and reordering my supplies. I must always be aware of possible drug-drug interactions (even including any supplements I take). I also must tolerate the MG symptoms that I can’t subdue, which can be so exhausting.

My collection of MG (and related) meds pales in comparison to that of some MGers, especially those who have significant comorbidities. I can’t even imagine how they are able to deal with it all.

Whether you're an MGer or a caregiver to someone with MG, please feel free to tell us any solutions you’ve developed for MG symptoms in the comments below.