The uncertainty of hypopara gives me anxiety about the future

Note: This column describes the author’s own experiences with Natpara (recombinant human parathyroid hormone) and Yorvipath (palopegteriparatide). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

For the first time in three years, I’m about to finish a full-length novel. As I race toward my book deadline, my back is in an unrelenting spasm, but I’m focused and determined and feel like I could fly. I need to write like I need air or food or calcium. Unexpectedly, however, I also keep freezing in terror.

A giant countdown clock looms overhead, reminding me that time is running out on my health. Will I still be able to work a year from now? Five years? How long do I have left before I lose this stability I’ve found?

Tick, tick, tick.

This clock has been my constant companion since the recall of Natpara (recombinant human parathyroid hormone). Back in early 2019, when I worked an office job and wrote books on the weekends, I started to feel … off. I’d been on Natpara for three years to treat my hypoparathyroidism, but had to continuously increase both my dose and oral calcium supplementation. By hour 18 after my Natpara injection, my low-calcium symptoms were severe enough to wake me, leaving me counting the hours until my next dose. Eventually, my calcium grew so unstable I had to leave my office job.

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Then, on Sept. 5, 2019, Natpara was recalled. I’d been at a coffee shop prepping for a book release. I found out via Facebook message.

I was lucky enough to be one of the 400 people to join the special use program, where we were allowed to use Natpara under specific conditions. Instead of repeatedly pulling our injections from the same vial, we could now take only the first dose to prevent the breakdown of the rubber seal with multiple needle pokes. As soon as I started the new process, my calcium went too high and I had to lower my dose.

Then, a few months later, I started getting horribly ill 20 minutes after my shot. It would hit like a wave with the worst nausea I’d ever had, along with shaking, crying, lethargy, and dizziness. For months my medical team tried to figure out what was wrong as my life was reduced to going from bed to couch and then back to bed. One day, we took my labs at a new time, and bam — we found the problem. My Natpara injections were causing hypercalcemia for several hours, and then my calcium levels would plummet too low later in the day. Our solution was to do off-label, twice-daily dosing.

I got another good year, when I wrote my “Love Me Dead” book series, but right after I turned in book three, Takeda, the pharmaceutical company that marketed Natpara, announced it was discontinuing the special use program. After that announcement, I deteriorated more. It felt like Natpara had given up, or maybe I had. Sitting up for more than an hour at a time became impossible, eating became a chore, and I slept half the day. By the time the expanded access program for Yorvipath (palopegteriparatide) opened, I was back to being nonfunctional and unable to write.

My medical team jumped at the chance to sign me up for the expanded access program, and I became the first Natpara patient to transition directly to Yorvipath. I began stabilizing. I began eating regular meals. The constant anxiety knot in my chest melted away. I could sit up for hours at a time. A few months later, I was able to travel and socialize and start working again. I got another chance at life.

But as I’m approaching year two on Yorvipath, the clock still hovers. Because what if year three on this medication marks the start of a decline, just like Natpara? What if I lose access to my medication because of an insurance issue, recall, or shortage?

Tick, tick, tick.

I’m sure if any of my therapists were to read this column, they’d tell me to work on staying present and not to worry about something I can’t control, that I’ll figure it out if it happens. The thing is, as hypopara research loses funding, my hopes for more immediate alternative options dwindle. But my therapists are right — as usual — that it’s worth living every moment I get the chance.

Despite the giant clock, I still get up every day, throw a heating pad on my back, and sit at my laptop. I can’t see the future, but I’m going to keep building mine with the hope that I’ll get more time. Maybe I’ll toss a blanket over the clock to give us both a rest.

Note: Hypoparathyroidism 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 another 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 Hypoparathyroidism News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hypoparathyroidism.