Modulating Reality: My Miracle CF Med Was All Hype

Modulating Reality: My Miracle CF Med Was All Hype

I’ve spent most of my life hearing that the cure for cystic fibrosis is just around the corner. Just wait a few more years, they keep saying, and it’s going to be right there. Then a few years passed, and a few more, and the cure seemed just as far away as ever. My first real hope came with the release of the CF modulators — in my case, I qualified for Orkambi (lumacaftor/ivacaftor).

The internet was abuzz. Everyone was saying Orkambi was the first real step toward the cure, a miracle drug that would alleviate CF symptoms to the point they almost weren’t noticeable. I was excited, constantly asking my doctor when I could start. Then I held those pink pills in my hand and they felt weighty, significant. This would be my first step toward becoming better.

The side effects were immediate and brutal. The worst was chest tightness, so bad that I would spend hours awake at night, unable to get comfortable because it felt as though I couldn’t breathe. It would be worth it, I thought, once the Orkambi started to work. But there’s the problem — it never did start to work, at least not in the way I felt I had been promised.

My sweat test levels remained exactly the same. My lung function percentage didn’t change at all, except for a swing upward of a few percentage points when I finally got active. This didn’t change with the Symdeko (tezacaftor/ivacaftor) either: I no longer had horrific side effects, but I didn’t see any obvious benefit minus a mild decrease in lung infections. This was the reality for me — the miracle drugs were anything but.

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Putting in more research, I learned this has been the sad reality for many people. New medications are constantly hyped up to be the next-level gamechanger when in reality they’re simply a steppingstone to something bigger. I felt so isolated by success stories, as if even in my cystic fibrosis I was wrong. Through putting out feelers, I learned I wasn’t alone.

There’s a strange feeling when what works so well for others doesn’t work for you. It doesn’t diminish the medications’ overall value, but it can feel isolating. We should be able to be honest with each other; not every discovery is as life-changing for every person as it’s hyped up to be, and that’s OK. Perhaps it’s time we held more realistic expectations for medications and a nuanced discussion of disappointments and setbacks in the medication world.

Having a medication do nothing is bad enough. We shouldn’t set ourselves up for further disappointment.

But what about you? What are your expectations of the modulators, and what was your reality?


Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.

I am a 29 year old Bay Area based writer living with cystic fibrosis.
I am a 29 year old Bay Area based writer living with cystic fibrosis.
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