Why Kaftrio was a mixed experience for Alexandra

Whilst there have been many stories of Kaftrio improving the lives of many people affected by Cystic Fibrosis, sadly not everyone has experienced the positive impact of this drug.



Alexandra Andrews is one of them. Her initial experience of Kaftrio was life changing – she didn’t cough for ‘three months’ and experienced increased levels of energy and was able to exercise more.



However, despite this initial positive experience, Alexandra soon realised that for her, Kaftrio wasn’t the ‘miracle drug’ she thought it would be.

In late July 2020, she started experiencing symptoms which included ‘a weird sore throat’ and was ‘very hoarse’ with phlegm stuck in the back of her throat that felt really ‘suffocating and grotty’.



After being declared Covid free, Alexandra was admitted to hospital. She recalls:



“I have never been so unwell, I emerged seven weeks later - worse than when I went in. I only took a break from Kaftrio for 1 week (my sinusitis issues stopped after being off Kaftrio for just two days and I never had this issue before taking Kaftrio). The hospital gave me every antibiotic going and none of them worked. Eventually I had to stop treatments as I was getting a full body rash from them. End of life/ palliative care was bandied about like it was going out of fashion.”



Alexandra was given five different types of antibiotics which failed to relieve her symptoms. She also experienced relentless insomnia where she didn’t sleep for ’65 days’ and she had an incessant tickly cough. Every night was arduous and she experienced increased levels of panic throughout the night as she couldn’t rest or get comfortable.



Her frustration levels increased as there seemed to be no resolution and she didn’t feel like the end was in sight. She took the decision to leave hospital and to eliminate any other treatments other than Kaftrio. Once at home, she immersed herself in fitness and wellbeing which included yoga, weights, and crafting. Finally, she was able to get back to living well and living independently.  She says:



“I went out shopping, did everything myself. I put the weight back on and managed to get over a couple of infections since last October without any treatment.”

So, upon reflection what does Alexandra think about Kaftrio now? She says:

“I have mixed feelings about Kaftrio. On one hand I could not put that weight on without it, that makes me feel physically and emotionally better. I look better and don’t look like such an ill person. I’m able to get more done, be more or less completely independent (except on bad days). My phlegm has not reduced though – I still have copious amounts. I have had the itchiest skin ever and had the perfect gut before Kaftrio.”



Despite physically being generally better, Alexandra has experienced issues with increased anxiety and ‘flatness’. She has experienced issues with memory loss in the short-term which has manifested itself in struggling to focus when participating in conversations and even on her ability to being able to spell. Her cognitive recall has also suffered:



“Whilst I can do a lot more, I just can’t remember it - I might not be able to recall whether I did something two hours ago or even two months ago. It’s bizarre!”



Whilst Alexandra admits that as an oxygen user that that this could be attributed to signs of low blood oxygen but maintains that her oxygen levels have not changed since being on Kaftrio and that it ‘definitely occurred post-Kaftrio’ and is getting worse.

Clearly Kaftrio has been a mixed bag for Alexandra, she has experienced a bout of ill health in recent weeks and admits that she feels ‘low talking about Kaftrio’ but feels that it’s important to be candid about her own personal experience. She concludes:



“I am grateful for what Kaftrio has done and (what it has) allowed me to do. I’m appreciative that I didn’t go downhill so quickly again after my last admission of 7 weeks and end up in hospital every 2 months. For that I am thankful.”



“I think the side effects need to be heard - because for some it’s not all roses and they can feel bad for speaking out or sad that it hasn’t worked for them, whilst the narrative is everyone else raving about it.”

Kaftrio can have less of an impact on older people with CF as it can’t reverse lung damage which Alexandra recognises:

"I’m older and have more damage – I am not deluded about its capabilities. I’m grateful I’m alive though and I have not needed any end of life or palliative care drugs since leaving hospital. My life has been beautiful, and I am surrounded by my wonderful garden that I now have had the energy to do in my own way. I’ve more of less got a cottage industry going with my cards and artwork. So maybe these were supported by Kaftrio, but not just Kaftrio”

Whilst we know this treatment works for many - we understand that Kaftrio won’t work for everyone. We won’t stop our work to ensure there are effective treatment for everyone with CF. We will continue to invest money in life saving research to find treatments for all, so that no one is left behind.



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