MG Medication and Navigating the "Donut Hole"

I’ve been on mycophenolate mofetil (generic of CellCept) for myasthenia gravis (MG) for several years now. I’ve never had an issue with getting any of my medication, but this past year was different.

Discovering I was in an insurance coverage gap

I’m on Medicare and have my own insurance as well. Last March I was hospitalized for heart problems and was put on another expensive medication, Eliquis. After being on 2 expensive medications for most of the year, it put me in the "donut hole" in October.

The "donut hole" is a Medicare coverage gap. There is a temporary limit on what your insurance will cover. It begins after the patient and the insurance have spent a set amount of money for drugs covered under the plan. Since I’d never been in the donut hole before, I foolishly hadn’t planned for it.¹

Having to choose between medications

Now, these are 2 drugs I cannot do without, so when I received notice that I was in the coverage gap, I wasn’t sure what to do. We have live on a fixed income since retirement, so this made it impossible to resolve my issues. I was also unable to get samples of either drug. How could I continue taking 2 of my most important medications? Something had to take the backseat and that was mycophenolate.

Before going into what I did to resolve my problems, I must say this isn’t a very smart or safe way to get through the issues ... but I was desperate. I did something I cannot condone anyone ever do!

I knew I couldn’t skip or stop the Eliquis at all. But I had been doing very well lately with my MG, even when I’d accidentally forget to take my medications. So, I decided to skip my nighttime dose of mycophenolate - my doctor was aware. She didn't like it, but she understood. At first, I skipped a nighttime dose every once in a while. Then I realized I wouldn’t have enough to get me through the rest of the year, so I stopped taking the nighttime doses altogether and took only the morning doses.

Minor MG symptoms

During those weeks, I did have a few minor eye issues when I was really tired, but nothing serious. I’ve been exhausted for months, but I figured it was mostly because of the amount of activity I was having to do on a daily basis.

I literally had no time to rest or relax. From the time I arose at 5:30 in the morning until I went to bed around 11 or 12, I was managing all the household duties, caring for my injured husband, and taking trips to the doctor. Everything was on me. Now that my husband's need for care is reduced, I’ve been able to rest a little more and am starting to feel better and less exhausted, so my minor MG symptoms have pretty much subsided.

Plan ahead for unexpected emergencies

I finally figured out how much MG medication I would need to finish the year, but I didn’t have enough even with skipping doses. This was very alarming. I started looking into other alternatives. I found one coupon for a discount, but it was still going to cost hundreds of dollars. Then, I finally found a coupon and pharmacy that would pay enough for me to be able to afford it. Imagine my surprise when I picked up a month’s supply for less than $15!

Moral of story: Be sure to check out all options for affordable medication and healthcare and prepare for a potential disaster regardless of circumstances or age. I plan to set a certain amount of money aside each year, as well as investigate other alternatives so this nightmare never happens again.

We should never feel like we have to compromise our own health. If I had been having any issues prior to or during scaling back my medication, I would not have done it. There is help out there, we just have to find it and prepare for unexpected emergencies in advance. I plan to do better at preparing for unforeseen circumstances, especially where my health is concerned. Lesson learned!