Why I Paused The Superhuman Months To Stop Kaftrio

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Coughy and Creon

5 min readFeb 11, 2021

Last time I put a Kaftrio post up was in the very first couple of weeks into taking those miracle little pills. And yes, they are miracles.

Yet, this week, I stopped Kaftrio after being on it for 4 months.

This post is going to explain why.

The Wonders Of This Drug

Kaftrio was far superior to the cf modulating drugs that preceded it. From the infamous purge on Week 1 to waking up without that notorious cf cough by Week 2. This drug was fundamental to almost fixing my lungs that were nearing their last legs. It is like somebody saying:

“I know you’ve been struggling for thirty years, well, here is another go at it, here’s another shot — for free. All you need to do is live it and make it count”

Becoming Physically Healthy

The differences looked like this… being “breathing pain” free. No gunk filling my airways. No mouthfuls of blood from the lung bleeds. An increased sense of smell, changes to my taste buds, improved digestion which meant no more painful CF belly.

I think what I enjoyed most was being able to laugh again, really laugh — hysterically, without ending up hunched over in a coughing fit praying to the pelvic floor Gods.

The weight piled on, I had some Beyonce worthy jelly. I was able to erase that sick girl image. I felt healthy. I was healthy. Kaftrio without question was a unique marvel.

The Side Of Kaftrio Nobody Spoke About

But, all drugs come with side effects, right. Pharmaceuticals usually go like this; we will fix one thing but you’ll need to put up with this other minor thing — like a trade off of symptoms and usually it works just fine.

It started with the legendary itchy rash, bloating, nausea, increased chest wheeze and headaches which passed within the first 3 months.

What didn’t pass was the incessant insomnia alongside the intense brain fog which was like a thick, grey haze that just wouldn’t shift. My brain was dumbed down, my mood and motivation were shot; I felt a shadow of my former self.

You know that saying “my brain has too many tabs open” well, it felt like that but when you tried to close them, it turns out your brain is just frozen, blank, stuck trying to process stuff… and the Esc key doesn’t work.”

Side Effects I Was Experiencing

Forgetfulness — forgetting names, things I knew, places, things I needed to do
Mind blanks, loss of concentration, unable to focus
Lapses of time, confusion, disorganisation
No motivation, losing confidence in my ability to do things
Increasing Insomnia
Mood changes
Anxiety (that was not present pre-Kaftrio nor triggered by anything stressful)
Adrenaline rushes or mini anxiety attacks for no apparent reason — sweaty palms, racing heart, churning stomach, feelings of dread or panic
Loss of libido
Lactating breasts
Break-through menstrual bleeding

What I Did Next

I finally reported these issues to my cf team after 3 months on Kaftrio because I couldn’t manage these symptoms alone. I needed help.

We switched my doses around, the blue pill in the morning and orange pills at night — no difference. We reduced my Kaftrio dose by half for 2 weeks with little improvement.

I would try anything to stay on these miracle pills. In the short-term we added in a sedating antidepressant (off label) to target my insomnia which helped me sleep but potentially exacerbated all my other issues I had with Kaftrio. It felt like swings and roundabouts.

Weighing It All Up…

I reached the point where I was struggling so much that I started to question myself. Was it Kaftrio? Was the insomnia exacerbating the Kaftrio side effects? Was it just effects of poor sleep and nothing to do with Kaftrio? Was it just lockdown blues after a year in a pandemic? Was it the after effects of shielding from friends and family?

A Difficult Decision To Put The Brakes On

What was most difficult about stopping Kaftrio is how it emotionally beat up my brain. I had so much riding on this drug and, all those things I had riding on it, it succeeded. It was my life lifeline. But, this lifeline was not without a cost.

Kaftrio was fixing my physical health but potentially sabotaging my mental wellbeing.

My cf team were heavily invested in my experiences as they have had other patients come forwards with similar side effects, some more severe than mine.

After much deliberation it was agreed I needed to stop Kaftrio to see if the side effects subsided whilst we await hormone test results, sleep studies alongside reports back from endocrinology and neurology as these could all give indicators to why the reactions are occurring and how we can manage them.

What Happened Next…

Since stopping Kaftrio, the neurological side effects and mood changes have completely disappeared which further cements that, in my case, it was a direct effect from the drug even if along side a touch of covid 19 lockdown blues.

This is not the end of my Kaftrio journey, by far. I don’t give up that easily. I hope to gain my cf superhuman wings back in the near future until then… it is back to Symkevi, my friends.

To check out the second part of this post which looks at possible causes of these side effects, how to cope, what you can do if your team aren’t listening and where you should be reporting any adverse reactions, click here.

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