Two Letters

twoletters

After many years of dosing myself with Zinbryta on the 15th of the month, yesterday marked Day One of my negotiating multiple sclerosis without the aid of a monoclonal antibody.

My disease has toned down quite a bit since I started taking the drug. Has my MS been mellowing with age—or with medication? That’s been the seven thousand dollar a month question: What is me—and what is the drug?

In a parallel but hopefully irrelevant experiment, my visits to the breast cancer folks inspired me to ditch my deodorant. It took a day to learn that without deodorant, I stink.

It was easy enough to replace the brand I’ve depended on for decades with an equally effective brand that is untainted by propylene glycol and aluminum, ingredients that are potentially carcinogenic yet remain as blandly ubiquitous as the pink ribbons protesting the persistence of breast cancer.

Will replacing one monoclonal antibody with another be as easy as swapping Secret’s “Protecting Powder” for Desert Essence’s “Tropical Breeze?”

The nurse at my neurologist’s office warned me it might take up to six weeks for my insurance company to approve a new MS medication. I chose to see the potential benefit of the delay—I have been noticing that my wounds tend to heal a lot slower on Zinbryta. Perhaps I’ve been lucky to have a mass removed from my breast just as my immune system is getting weaned off an MS drug.

And yet I could not ignore the risk a six-week interval poses: the stakes are a lot higher going off an MS medication than going off a deodorant. MS is opportunistic, and tends to spring into action whenever the body is vulnerable. Perhaps undergoing surgery was the worst thing to do while getting weaned off an MS drug.

The day after my surgery, I got a call from a nurse from my insurance company. I usually regard such nurses as corporate spies. I have no dearth of interactions with health care professionals, or with human beings in general, so such calls do not fulfill an unmet medical or emotional need. But this time around, I did have a need. I decided to play nice. I discovered this nurse was actually more informed than most of the nurses the insurance companies had sent my way. When I found myself searching for the term, “monoclonal antibody,” she supplied it for me, and tactfully assured me I had nothing to worry about when I complained that my facility with language felt somewhat impaired after the general anesthesia. When I told her about the anticipated delay in getting my new medication approved, she promised she’d see what she could do to expedite things.

She was as good as her word.

Two hours later, I got a call from my neurologist’s office. The new drug, Ocrevus, had been approved.

On March 16, Day One of my life beyond Zinbryta, I received two letters from my insurance company.

The first letter denied coverage for Ocrevus.

It’s funny how seeing a letter on stationary can feel more convincing than on one’s own memory. I was tempted to check my calendar, just to confirm that I did indeed have an upcoming appointment for an Ocrevus infusion. Instead I opened the second letter.

The second letter was dated on March13th, the day of my conversation with the insurance nurse. It was a notification of approval.

Thank you, insurance nurse!

I’m so glad I took her call.

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3 thoughts on “Two Letters

  1. Congratulations on getting approved for Ocrevus so soon!

    Your question about your mellowing MS: “What is me—and what is the drug?” Well, I’m wondering also “What is your diet?” like, has any diet you tried helped with energy, brain fog, walking, etc.? Are you currently on the Wahls Protocol stage one or two, and if so, how long? Thanks.

    1. I’ve been following Wahls guidelines since mid-November. It’s a smart way to eat. I guess I’d say I’m more a stage two eater than a stage one, but I do relax and have, say, two tablespoons of brown rice with a meal if it’s offered. My energy levels are higher than they were when I was following a strict Swank Diet.

      1. Thank you, and another question if this isn’t too time-consuming. I am newer to MS treatment and have been reading people like Dr. Wahls (https://terrywahls.com) and Robin Howard (https://defeatingms.blog/) who started the Wahls Protocol (level three), seen their symptoms reverse dramatically, and subsequently stop taking MS drugs (I don’t think they take any). I naively assumed this was common until I saw your comment inferring “your body” (time-exercise-diet?) and Zinbryta all seemed kinda sorta equally helpful/yet not-helpful-enough.

        Is it your experience that the Wahls Protocol can’t reverse your symptoms, no matter how much time, and that Ocrevus could reverse symptoms that Wahls couldn’t? Or are you thinking, why waste time figuring this out when you could just do both? I’m trying to understand more what drugs can do that Wahls can’t (and vice versa). I, of course, applaud your doing everything you can do to improve your health, just trying to understand all options more. Thank you for your really helpful blog. 🙂

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