Minor cuts and infusion delays leave me worn down as I navigate MG
One thing leads to another to keep me from getting my Ultomiris treatment
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A few weeks ago I cut my left hand while chopping food. I gave the wound little thought. It became infected, and, rather stupidly, I ignored it, as if a problem might go away if I refused to look at it.
I knew better. People living with myasthenia gravis (MG), especially those on corticosteroids, have compromised immune systems. A study that matched 5,000 MG patients with 20,000 people who didn’t have MG found that nearly 53 of every 1,000 MG patients had a serious infection, compared with about 31 per 1,000 in the general population. I know steroids can slow wound healing, but knowing something and acting on it are different animals.
By the time I went to the emergency room, the heat index outside was 106 F. My Uber driver dropped me at the wrong location, and I wandered around looking for the entrance. Twice, I ducked into buildings and called for directions. I must have looked like a madman. I finally found the ER. After an examination, I was prescribed an antibiotic.
The following Wednesday, I was scheduled for an infusion of Ultomiris (ravulizumab-cwvz). That morning, the infusion clinic called to say they needed proof of my meningitis booster. I received that vaccine more than a year ago.
The requirement is not frivolous. Ultomiris blocks part of the immune system that defends against meningococcal bacteria, so patients must be vaccinated with both MenACWY and MenB series and revaccinated as treatment continues.
Getting vaccinated
In 2025, I scheduled the MenACWY booster with a provider 20 miles from home. When I arrived for my first appointment, I was told the nurse scheduled to administer the vaccine had left early. No vaccine for me. When I arrived for my rescheduled appointment, I was asked where the vaccine was. I had no idea. I assumed they would have it. They didn’t. Frustrated and angry, I went home. The vaccine was later delivered to my home, and with its administration, I was good to go.
The only record of the vaccination that I know of is a note in my neurologist’s patient portal, listing the medication and the scheduled date. The clinician asked whether I could find the delivery receipt. I can’t even tell you the carrier. I dug through old emails and found a discussion between the head of my neurology practice and Alexion, the manufacturer, about my vaccination. I sent it to the infusion clinic and asked for a call if that was not enough. After a few hours, the matter was settled.
Back to infusion day. I arrived that afternoon and was told I had an outstanding balance of $2,400. The practice’s patient portal said my balance was $0. The staff were kind, but they told me that the patient portal wasn’t the best website and that I should use an app that might have different information. Evidently, the patient portal doesn’t communicate with the suggested app. It felt like I was in a parallel universe where up was down and down was up.
Charles Dickens knew this territory. In “Little Dorrit,” it is “one of the principles of the Circumlocution Office never, on any account whatever, to give a straightforward answer,” so Mr. Barnacle can offer only “Possibly.” I had met his cousin, “Might.” By then, I was worn down, and I kept hearing what I was told at my diagnosis: Stress has a negative effect on MG symptoms.
At the infusion chair, the nurse took my vitals and noticed my hand. I told her I was taking an antibiotic, which prompted her to check with a neurologist before proceeding. She was right to be careful, since Ultomiris’ prescribing information warns of serious infections. The verdict was no infusion. My own homework suggested antibiotics do not automatically rule one out, but that call belonged to my doctor. I had spent $53 on fares, in a heat index of 105 F, for nothing.
Things go wrong
That evening, I spoke with my sister. She’s someone I turn to for advice. With her biology degree, she knows a great deal about human anatomy. I told her I could not have survived dozens of struggles like those of recent days without my family and friends, my support system.
Too many people lack a support system and even the resources to receive treatment. What happens to them? Do they miss appointments, go bankrupt from the costs of chronic illness? Do they die sooner than they would have otherwise?
My sisters and brothers in the rare disease community deserve better. No one should be bankrupted by the costs of chronic disease.
So here I am, worn down, worn out, and aware that tomorrow I will need to dip into my ebbing strength and go on.
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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