My Experience with Rituximab
I was diagnosed with anti-MuSK myasthenia gravis (MuSK+ MG) in February of 2019. My neurologist recommended getting rituximab because of its high remission rate for patients with MuSK+ MG. However, I was pregnant at the time so I had to wait until I delivered the baby and finished nursing to start. I was hesitant for many reasons.
I never imagined I would be battling a chronic illness and faced with major life decisions at 27 years old. One of the possible reactions of rituximab is a rare and often fatal disease of the central nervous system called progressive multifocal leukoencephalopathy (PML). Though the chances of PML are extremely rare, the fact that it was a possibility was frightening.
Making the decision
I felt like I was choosing between two evils. It took all of my strength to just survive each day with the symptoms of MG. At the same time, I was fearful of the potential side effects of rituximab.
Every morning I was short of breath as I struggled to prepare breakfast for my children. My swallowing muscles were getting weaker, causing me to choke on food and water.
I had become severely underweight and was doing everything I could to gain it back. There was only so much my family could do to help me, and it was a learning process for all of us to help me get through each day.
Preparing for the infusion
After months of fighting the symptoms that were increasingly getting worse, I could wait no longer. I was feeling hopeless and desperate.
I needed to feel better to take care of myself and my family. Finally, I decided to get rituximab. I consulted with my neurologist and pharmacologist and got all my questions answered. However, the anxiety did not leave.
The week leading up to the infusion, I tried to find every patient experience I could. I scoured through YouTube videos, Facebook groups, and good ol' Google to try to anticipate what could happen. Though I found comfort in some stories, only a few of the stories I found were from people with MG.
My husband wheeled me into the infusion center because at that point I felt too weak to walk. The nurse first gave me pre-medications, Zyrtec, Tylenol, and an IV steroid to prevent possible allergic reactions. After 30 minutes, she started the infusion. I was nervous as every possible side effect ran through my head.
Thirty minutes passed and nothing. The nurse bumped up the rate of the infusion and we continued. Another 30 minutes and all I felt was wide awake from the IV steroid. By the end of the infusion, I was relieved to have had no reactions, which I know is not the case for all.
I felt a little more tired than usual the days following the infusion but had no other side effects. A month after the infusion I started to feel energy and strength returning to me. I was no longer breathless in the mornings and swallowing had become less tiresome.
After the second month, I could eat effortlessly and go through my day without fatigue. By the third month, my vision was finally clear and I was symptom-free. Each person's response is different, so it is important to discuss with your doctor to weigh the risks and benefits.
I am glad I took the leap. I have renewed hope and am able to enjoy every day. Though I still face the fear of PML for future infusions, I remind myself of all that I have to be grateful for. As I count my blessings, my worries blur into the distance.
Do you think there is enough awareness of myasthenia gravis?