The treatments for myasthenia gravis are nothing short of a miracle
A columnist pays tribute to the researchers who develop lifesaving drugs
Note: This column describes the author’s own experiences with Ultomiris (ravulizumab-cwvz). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.
“I dabbled in words and found they were my life,” Irish poet Patrick Kavanagh once wrote. I get what he means. As a kid, I loved getting out the dictionary and browsing. New words excited me.
That’s still true today. I love when words evolve with new meanings over time. For example, it’s cool how the word “catfish” now also refers to a deceptive practice. What about tablet? Once carried by Moses, it’s now also a touchscreen general purpose computer. Words have life.
During a recent meeting of columnists here at Bionews, the parent company of this website, we discussed the roller coaster that is life with rare diseases. As someone who has lived with myasthenia gravis (MG) for four years, I’m familiar with this ride, which isn’t one you’ll find at the state fair. As I listened to the discussion, I realized that this MG journey has changed my understanding of the word “miracle.”
Back to life
I grew up in a Catholic environment. I was educated by the Sisters of St. Joseph, the Xaverian Brothers, and Augustinian monks. Many of them were brilliant. Some were nutcakes. Overall, they were very good at what they did. With each group we learned about miracles, and our understanding of the term evolved from infantile to more nuanced.
In grammar school, the sisters taught us about miracles. We read about priests who flew around the church after receiving Holy Communion. We listened to sister Jean Marie explain how crystal containers filled with a brownish powder turned into blood on certain holy days. The best miracles were the incorruptible bodies of saints. Though dead for hundreds of years, they hadn’t decomposed. It was a miracle! Sister told us so.
I wanted to fly around a church. One birthday, I asked for a vial of dried blood that would liquify on holy days. I didn’t get it. I’m sure my parents were worried. The first time we were in London, we saw the glass coffin of a bishop who was executed during the English Reformation. He appeared to be incorruptible. Maybe there was something to all this miracle talk.
As I matured and studied theology, chemistry, and philosophy, my understanding of “miracle” changed. I saw it as some form of divine intervention. That was linguistically satisfying. But it didn’t mean much to me.
At the columnist meeting, I had an epiphany. I looked at my calendar and saw that on May 14, I’m scheduled for my fourth Ultomiris infusion. To say that Ultomiris gave me back my life is not an exaggeration. That drug is miraculous.
Alexion, the manufacturer of Ultomiris, offers patients a liaison to help navigate the treatment process. I asked mine how the drug was developed. She gave me some incredible information and sent me lots of reading material. I had to remind her that I’m a history teacher.
The brilliant women and men who created Ultomiris, and other drugs like it, speak a language I don’t understand. But I’m glad they do. How in the name of God did they chart a course from Chinese hamster ovaries to a lifesaving drug that gives MG patients like me a new lease on life? There’s a simple answer: It’s a miracle.
Despite all of their brilliance and intelligence, however, it’s unlikely that any of these researchers will turn water into wine. I bet they’ll never walk on water or part the sea. But they do bring people like me back to life.
When I was a kid, we used to kneel beside our beds at night and pray. I haven’t done that in years. But every night before I sleep, I do thank God for creating women and men who have the brains, determination, and desire to help others.
I’m not Lazarus. There are no incorruptible bodies in our family. If we run low on food, we can’t multiply it, which is fine with me. I live surrounded by pharmaceutical advances that, to me, are the greatest miracles.
Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
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Siobhan
Is it an audio, it’s so hard for us with MG to read for long periods of time looking at a screen, or a book etc. and when I do, I suffer another areas! I love how you say you don’t have to be locked in, I’m waiting for that. However, each time not every time I go out I have a setback.! Now that I can control the remission while living in the remission! I know better when I get infections how to avoid any outside that will fill that teapot and turn me over!🌹 I had all four experiences we go through that are very hard on a stressfully and emotionally at the same time, as this came with Covid! Mine started with the masks, and a new house build with magnesium level so high in the water! And go figure along with the breath work water became my identity! Not to mention Epson salts! And The loss of a partner because this crazy disease that comes and goes, was just too confusing, and no matter how I try to explain what was happening to me it was at a point where he took a personally! Some Collett walls! And I just couldn’t break them down - nor could I sacrifice for what I was about to reject!
I hope Double is something that may be available!
Steve Patterson
I currently am doing the Solaris treatments but want to eventually change over to ultiomiris as I have heard very positive response to this even though it is like Solaris the fact the I can go 8 week between infusions is a great convenience and allows me to reclaim more of my life. I have heard as well most who have changed are experiencing great results and have dropped almost all medications which is exciting to me.
Mark Kitts
Hello everyone. Iam on Mestion 90mg 3 times a day and getting ready to start Rystiggo infusions. Has anyone done the infusions and if so how has it helped? Thank you
Stephen Voellinger
I just completed my initial load a week ago. While I expected not to see a big change until 3 months, I have already seen a big improvement in my daily life. I could do maybe an hours worth or work in the morning(although it took 3 hours to complete) and I would be exhausted the rest of the day. I actually cut the grass today. Other symptoms like voice changes and hand issues are much better. Still have some eye issues but livable. Hope it continues to work but best reaction so far. BTW I was diagnosed 2 1/2 years ago and have tried IVIG and Vyvgart but results weren’t astounding.
Mark Harrington
That’s wonderful. I hope your progress continues. Best of luck.