Two-ish weeks ago I received this note from my always-tactful neurologist:
“Your TB test is coming back positive. Before we move forward with Ocrevus, I would like for you to see infectious diseases to make sure you are safe as we make these transitions.”
“TUBERCULOSIS?! What fresh hell is this?!” I asked myself.
“Ocre-who-now?” You may be asking yourself.
Let me explain. My current medication, Tysabri, which has kept my immune cells from crossing the blood-brain barrier thus keeping me lesion-free for lo these seven years comes with a nasty risk called PML. Take it away, Cleveland Clinic:
Progressive multifocal leukoencephalopathy (PML) is a disease of the white matter of the brain, caused by a virus infection that targets cells that make myelin — the material that insulates nerve cells (neurons). Polyomavirus JC (often called JC virus) is carried by a majority of people and is harmless except among those with lowered immune defenses.
Part of the Tysabri protocol is getting tested for the JC virus every six months, and my levels of antibodies have slowly crept up to concerning levels. Add to that the fact that PML risk goes up the longer one is on Tysabri: time for a new medication.
My options were Mayzent, a daily pill that traps white blood cells in the lymph nodes so they can’t attack my precious myelin, and Ocrevus, a biannual infusion that targets a specific B cell that “plays a key role in the disease.” Choosing medications is stressful and difficult, especially when all you have to go on are the cheerfully vague drug-company-produced brochures and indecipherable research abstracts. Much as I cling to my AP Bio test score as proof that I am science smart (thanks, Mrs. Howerton!), when it comes to my own health I don’t like to risk it. So I called in my own personal science guy, Dr. Dad (who spent his career in the Cell and Molecular Biology Department at the Medical College of Georgia), and he suggested I contact a family friend who is a neurologist with MS–and a great guy to boot.
That conversation turned my attention away from Mayzent, which had tempted me with its siren song of “just one pill a day” and being touted as the only drug approved for secondary progressive MS (which I have), because who wants their white blood cells held back during a pandemic?! Family friend reminded me that targeting one specific type of B cell is less immunocompromising and that Ocrevus has a longer track record. Ocrevus it is!
[Brief sidebar. How lucky am I to be reasonably smart and to have outside resources to call upon?! In these moments I worry about my fellow MS-havers that don’t have the luxuries of time to ponder these choices, super smart people to guide them, and only moderately addled brains.]
I told my doctor my choice, and we came up with a plan: bloodwork, one last dose of Tysabri, an MRI four weeks after that, and then my first infusion four weeks later. I’d be newly medicated by fall!
Enter the positive TB test. A week after receiving it, I enjoyed a telehealth visit with infectious disease specialists Dr. Z and Dr. B, who asked a battery of questions and observed “You don’t look like you have TB.” They also explained that I likely have latent TB, which means I’m having an immune response without any symptoms. If that’s the case, I have three months of antibiotics ahead of me. If it’s more serious, the treatment stretches to nine months. My future depended on a chest x-ray.
So I got the chest x-ray. And, much like with each MRI, I simultaneously know that the results aren’t hugely consequential (the details of what’s going on inside me won’t have a huge impact on my life) and have a low hum of anxiety as I await the dispatch from my innards.
This morning’s 9am telehealth call in which I was to get results has been postponed because the radiologist’s report wasn’t ready. I am annoyed. I am calm-ish. I am eager to know just how many months of potential yeast infections lie ahead. I am wearing a bold lip (a favorite coping mechanism) and hoping for the best.
UPDATE: My lungs are clear! I have three months of copious antibiotics ahead of me as well as orange pee (and potentially orange sweat and tears?!) and NO ALCOHOL. As a particularly humorous friend put it, “Sorry about your consumption. At least you have more in common with Keats now.”