Because this month is Myasthenia Gravis Awareness Month, and it marks three years since I was diagnosed, I thought it would be fitting to go through my treatment journey this far.
In June 2017, when I was first diagnosed, my neurologist put me on a pretty standard treatment for Myasthenia, including pyridostigmine (AKA mestinon), prednisone, and IVIG infusions. Pyridostigmine actually has a really interesting history. In 1955, it became FDA-approved for the treatment of Myasthenia gravis, but before that, it was used by soldiers and other military personnel in the Gulf War. Pyridostigmine temporarily treats muscle weakness and was found to increase survival in combat if taken prior to nerve gas exposure. Prednisone is probably one that most people will recognize. Prednisone is a steroid that acts as an immunosuppressant by reducing the autoantibodies my body produces. I also started Intravenous Immunoglobin (IVIG) infusions, which basically is pooled immune proteins from thousands of plasma donors that acts by destroying and neutralizing autoantibodies produced in my body that cause the muscle weakness.
During the early weeks after diagnosis, I was also in physical and occupational therapies to help me learn how to function again. We worked on simple tasks like getting out of bed, getting out of chairs, and being able to hold a pencil and eating utensils again. I had a really great team of physical and occupational therapists that met with me multiple times a week so I could get back to work and a semi-normal life.
That treatment plan worked well in the beginning, except for the fact that high doses of prednisone caused me to gain almost 40 pounds, and my mental health was at an all-time low. I was able to function, but not to great extents. So, in September of 2017, I decided to go to the University of Iowa for a second opinion. This neurologist spent a large portion of her morning going through my medical records and listening to my story. We decided on a procedure called a thymectomy, which is the removal of the thymus gland (not the thyroid, which is very commonly confused). Many patients with Myasthenia gravis have an enlarged, overactive thymus gland, which can become cancerous, so it is normally removed within the first year of diagnosis. Unfortunately, the cardiothoracic surgeon wouldn’t even schedule a consult with me until I was below 20 milligrams of prednisone. At that time, I was on 60 milligrams, so I put my body through a lot of hell to get to under 20 milligrams in just a few weeks, and on December 8th, 2017, my thymus gland was successfully removed without any signs of malignancy.
From that point, I was also put on mycophenolate mofetil (AKA Cellcept), another immunosuppressant, after trying multiple other medications that I seemed to be allergic to. I started feeling a little better, but I was still having a lot of weakness. Within the first year of diagnosis, I was hospitalized four times. The IVIG infusions every couple of weeks were helping, but they were causing excessive bruising from overuse of my veins. My care team recommended getting a port placed, but I really wanted to wait until after my wedding.
We didn’t mess with my medications much between the end of 2017 and August 2018 because I didn’t want to risk not feeling well for our wedding. I wasn’t feeling great, but it wasn’t unbearable. After our wedding in August of 2018, I went off of mycophenolate mofetil, because I would need to be off of it for several weeks before planning a pregnancy. At that point, we also scheduled surgery for a port placement, which I got on September 17th.
We started trying to get pregnant shortly after, so we didn’t mess with my other medications. However, after a long year, we couldn’t have a successful pregnancy (more on that later), so we decided to focus more on my health.
My doctors had mentioned Soliris as a treatment for Myasthenia gravis during my first appointments in 2017, but it was still very experimental. But by this point, I wanted to try anything and everything. We started pushing for this new medication, but I had to get approval through insurance and the company that sells the drug. My doctor also had to be competent to prescribe Soliris, so he had to take an online course to get certified. We had to prove that we had exhausted all other treatment options and that nothing was working.
Finally in May 2020, I had my last IVIG infusion and got my first Soliris infusion. The best way for me to describe it is that it felt like a switch was turned on. My brain fog was completely gone, I could breathe without feeling pressure, and I had no signs of muscle weakness in my extremities. Since then, I have had minimal Myasthenia symptoms. I am able to work out again and be independent for the first time in three years, which feels incredible.
My treatment journey has been a long one so far, but one thing I’ve really learned is you HAVE to advocate for yourself. When I first got diagnosed, I sat back and let whatever happen, happen, even though I had done extensive on my condition and knew there were different and perhaps better options. Listen to your gut, and advocate for yourself.