Finding Relief from the Adverse Effects of Mestinon

I’ve seen and heard many comments about the side effects some people tend to have with Mestinon (pyridostigmine). I think it’s pretty common that these side effects can cause a lot of distress. As someone who has experience with these side effects, I'd like to talk about how I have found relief. These methods helped me, but be sure to talk to your doctor if you're experiencing adverse effects of Mestinon.

Taking Mestinon with food

When I was first diagnosed with myasthenia gravis, I was prescribed was Mestinon. Some of the side effects of this medicine include nausea, vomiting, diarrhea, stomach cramps, increased saliva, slow heartbeat, breathing problems, skin rash, muscle cramping and twitching, excessive sweating, and more.1

The side effects I personally experienced included stomach cramps, diarrhea, muscle cramps, and twitching. At first, I wasn’t sure what was causing these issues, so after a few days, I started paying better attention to when the symptoms hit. I found the stomach and digestion symptoms hit within 30 to 45 minutes after taking the drug.

I did some research and found that these side effects can occur with the drug, so I decided to see if I could take it with food. What a pleasant surprise to be able to take it with food and have little to no issues. However, I found that not just any food was going to save me from the adverse side effects. It had to be something creamy like mashed potatoes or some kind of dairy.

Adjusting our groceries and meals

We had to start buying some different groceries than we used to. I also had to change how and what I cooked. Before my diagnosis, I started to transition from whole milk to 2 percent. I had been on the 2 percent for a while after my diagnosis and was ready to go to 1 percent.

Opting for whole milk

Well, that didn’t last long. The abdominal cramping and diarrhea returned the same day I switched ... and with the same vengeance. At first, I didn’t connect it to the milk. After all, even 1 percent still had fat in it! But, apparently it didn’t have enough fat, so I dropped back to 2 percent milk. I drank that for a while and I was still having the side effects. As soon as I went back to whole milk, the side effects subsided.

Adding dairy to my meals

When I cooked a meal, I had to make sure I had some kind of dairy either included in the food or as a drink. It didn’t take a lot of dairy to help me. Even 5 ounces of milk was usually enough to prevent the pain and gastrointestinal turmoil! I found even cheese sauces helped.

A few other dishes that worked well were Alfredo, macaroni and cheese, white gravy, cereal, baked potatoes with cheese and/or sour cream, dips with some form of dairy, and cheesy rice. I’m sure cottage cheese would have worked, too, but I won’t eat that! Having a meal that included enough dairy, and the right form of it, was sometimes difficult. Therefore most of my meals included chocolate milk, ice cream, or mashed potatoes and gravy.

Snack options

One of the doses I took was just before bedtime so I was not having a meal. I didn’t want to always be drinking milk or eating ice cream, but I needed something. I started purchasing little pudding packs. They worked like a charm! The pudding had enough dairy in it to prevent and/or alleviate my symptoms. And I was able to alternate them so I didn’t get too tired of the same foods all the time.

Massage for muscle cramps

I also had muscle cramps and twitching (fasciculation). The twitching took place mostly in my eye lids and forehead. It never caused any issues or pain, but it sure did feel weird and my husband could see the muscle twitching in my forehead. Because it wasn’t an issue, I just put up with it. However, that wasn’t the case with the muscle cramps. Those were relatively moderate, but I’d still have to stop what I was doing and massage the area if in my hands or fingers, or walk it off when it involved my lower extremities.

Thankfully, I was only on Mestinon for a couple years. I am now being treated with mycophenolate (CellCept) now. I’m also no longer on a diet of dairy for every meal. If you have GI issues with Mestinon, what has helped you? Do you have any of the other symptoms?

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