FOMO

I wasn’t anxious about my six-month visit with Dr. Z yesterday, but I didn’t sleep well the night before, waking at 4 a.m. with no hope of drifting off again. So I went for a walk at 5 in the dark, listening to the birds as they began to chirp, taking in how slowly light reaches morning as I went. The sun was just about to rise as I finished and headed home to get ready.

I arrived too early for my appointment and spent more time than usual in the waiting room. There were old-timers in wheelchairs, middle-aged people with canes and rollators and weary looks, and relatively new club members looking mostly bewildered or worried. After some confusion between me and a man named Aaron who had an appointment with Dr. Z at the same time, I was brought to an examination room and eventually met by Dr. Z, already behind schedule but taking her time with each patient. I see that as a good quality, even if it means waiting longer. MS has taught me so much about waiting.

We looked at my brain and spinal cord together. I saw the lesions my last MRI revealed, and we compared them with previous images. There’s something satisfying about seeing with my own eyes what’s happening in there, and I picture those white blips when I’m not feeling well, when I’m tingling and numb. Dr. Z ran me through the usual checkup, listening carefully and taking notes as I described changes since we last met, and then we had time to go over the questions I had for her. Most would be uninteresting to a general audience, but one in particular has been on my mind.

I’ve long had fear of missing out about discontinuous MS therapies like Lemtrada and more recently, Mavenclad. Unlike other MS treatments, these are administered for a few days each year for two consecutive years (sometimes a third if needed with Lemtrada), then stopped, and Lemtrada can put MS into long-term remission. Remission! Short of a cure, the idea of halting this disease is one I haven’t been able to let go of.

Mavenclad is a newly approved therapy, one that goes after T-cells and B-cells to reduce demyelinating events. In the CLARITY study, it was tested against a placebo, not another disease-modifying therapy, so its rate of reducing relapses by 58% isn’t that impressive. I was curious about it but not really interested, and Dr. Z felt the same way.

Lemtrada has had my attention for a long time, though. It is infused to essentially reset the immune system, hopefully making it forget MS as cells grow back. It has potentially severe side effects, including issues with the thyroid, heart and vascular system, liver and kidneys, along with increased risk of infection. Its use has been restricted in Europe while they investigate problems resulting in death. Dr. Z only turns to Lemtrada in cases where patients have no other viable options left, though other doctors have had positive results starting patients early on in their disease. She said she has had about 20 patients treated with Lemtrada. Of them, two had strokes, one had a pulmonary embolism, and at least three relapsed within five years of treatment. Because she uses it sparingly, these negative results are not necessarily representative, but she also worries about the long-term effects we don’t know about yet when it comes to Lemtrada. Our discussion helped me get over my FOMO.

Ocrevus, she reminded me, is a serious drug. A big, bad dog of a drug, one that has changed my immune system forever. “Even if you stop taking it,” Dr. Z explained, “your immune system will always have the memory of it, and it will change the way your system responds to other therapies.” This makes sense, of course. She assured me that given how active my disease was between diagnosis and treatment, how many serious lesions formed, that Ocrevus was the best choice. “Your MS was very active and quite aggressive,” she said. Ocrevus has kept me relapse-free for a year now; on a lesser treatment, she believes I would have had at least one relapse by now, likely more.

To be sure that I am stable, Dr. Z agreed that we should do another brain MRI in November, the next time I’ll see her as long as I don’t have new symptoms. I left feeling good, optimistic even, secure in the treatment I’m receiving being right for me, grateful for all of the ways I’m still able to enjoy my life, looking forward to a summer of great possibility, dawn on the horizon.

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2 thoughts on “FOMO

  1. Gorgeous photo, Erin! And good on you getting out for a walk so early. The only way I ever see dawn is if I stay up all night – which hasn’t happened in a long time! That’s great your appointment went well, it sounds like you have a great neuro. Here’s to a fantastic, relapse-free summer! 😊💕

    Liked by 1 person

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