My twin needs his MG medicines forever, which I didn’t understand
3 primary treatments help maintain his health, but he hopes for a cure
This column describes the experiences of the author’s brother with side effects to several MG medications. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.
Comedian Chris Rock was at the peak of his creative powers in 1999, when he recorded the “Bigger & Blacker” comedy special. I still watch it often. In it, he joked that doctors and pharmaceutical companies have no financial incentive to cure diseases. Rock argued that no major disease had been cured in decades because “ain’t no money in the cure; the money’s in the medicine!”
I remember that rant for more serious reasons now. My twin, Aaron, was diagnosed with myasthenia gravis (MG) in 1999 at age 24. The doctor who diagnosed him had to pull out a medical book to explain the condition.
While there have been numerous advancements in medical research and new medicines to treat MG, a lot about the disease is still unknown. I know my twin has been taking various medications to treat his MG, but until a recent chat, I didn’t know anything about them. I knew nothing about their side effects.
Additionally, I don’t know what it’s like to have a serious medical condition and hope for a near-term medical breakthrough or cure. I keep saying it because I mean it: Bringing up these topics with Aaron is hard. His MG flare-ups are severe. While I appreciate how much he now talks openly about his condition, I don’t know if I’d want to do that if I were in his place.
So much has been left unsaid about his condition over the past 25 years, and I can’t let that happen anymore.
‘Not a test dummy’
Aaron told me that he often looks for medical news about new MG research or medicine. Of course, he also takes meds as prescribed by his doctor. Aaron is wary of taking new MG medicines before they’re fully tested.
“I pay attention to new medical news for MG, but only some, not all,” Aaron said. “New medicines always have side effects. I would only take what won’t hurt me. I’m not going to be anyone’s test dummy.”
That reply made me think about the meds he’s taking now. I wondered what they were and what side effects he experiences because of them.
Aaron takes three major drugs to treat his MG. One, azathioprine (often known by its brand name Imuran), is an immunosuppressant that’s used to treat many diseases and ailments. Aaron said he doesn’t experience any side effects from this drug.
He also takes pyridostigmine bromide (known by its brand name, Mestinon), which is used to decrease the effects of muscle weakness caused by MG. Aaron said that while this drug is helpful, he experiences uncontrollable muscle twitching because of it.
Soliris (eculizumab) is the third major drug Aaron takes to treat his MG symptoms. His worst side effect from this drug, he said, is headaches.
“You have to take these drugs for the rest of your life?” I asked him.
“Yeah,” Aaron replied.
I then asked if any MG medical news offered him hope for advances in treatments. Had any recent news gotten his hopes up? (I had trouble asking him this question, as I wondered how I’d feel in his place.)
“Not really,” Aaron replied. “Of course, I hope something new will come out that will help or cure me, but it would probably cost a lot of money.”
That quote made me remember Rock’s routine. If Aaron doesn’t take these medicines daily for the rest of his life, his MG will irreparably disable him. I’d never thought of the weight of his need for meds until this chat.
We talked about the chances for an MG cure in our lifetimes. While that may not seem feasible now, I hope it happens. I sincerely hope there are scientists out there who see the value in the cure, not simply the maintenance medicine.
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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