Advice for Starting Kaftrio from a Patient
My friend is starting Kaftrio on Monday and asked me the question “What should I expect on Kaftrio? How is it being on Kaftrio?”
It’s like being asked the question “what’s it like having CF?” – as in its not going to be a quick answer! Just because I had a certain experience doesn’t mean someone else will!
I have been taking Kaftrio, or Trikafta as it is known in the States, since June on compassionate basis. I’ve had a bit of a journey with it, and it hasn’t been plain sailing. I will leave that to talk about in other posts – this is not the time!!
This is the Triple Therapy – the next generation of modular therapy drugs, after Orkambi and Symkevi.
I have the following advice from starting Kaftrio (or Trikafta as it was then!) several different times.
Nervous about Starting Kaftrio?
A lot of people have said to me that they feel anxious about starting Kaftrio. Some might say they are in a good place and don’t want to rock the boat. Or they are concerned Kaftrio may not work for them and the implications that this may cause. Others are worried because they have heard people put on a lot of weight and they don’t want that. For whatever reason people are anxious (I know I definitely was when starting it!), I have collated a list of dos and don’ts to try and help people through this uncertain time. I hope it helps!
Dos and Don’ts when Starting Kaftrio (Trikafta)
1. Do not – Have pre-conceptions of Kaftrio and how it will affect you!
As far as I can tell, there is no one specific way Cystic Fibrosis affects our bodies. The disease manifests itself in different ways in everyone, and I’m pretty sure this is the reason why Kaftrio affects us all differently.
Please don’t go into this thinking it is a wonder drug and you’re going to be running a marathon by the end of the year, as it could be that you will end up quite disappointed.
Go into the experience with an open mind and take things as they come. Not everyone gets amazing benefits and if you go expecting a massive up-swing you could be setting yourself up for disappointment if you don’t get this instantaneously.
This leads on to the next piece of advice…
2. Do not – Look up other people’s stories of their experiences of Kaftrio (or Trikafta).
Literally everyone has a different journey with Kaftrio. Some have exceptional lung function increases, some don’t; some have an easy ride with no side effects, some have a completely hell-raising experience.
Generally, the people telling you about their experiences are the ones on either side of the scale – an extra good or extra bad experience. A bit like reviews… No one adds a review to Trip Advisor saying their visit was pretty good but uneventful – those that add comments were either thrown out (no doubt for being a twat), or wanked off in the toilets… (a slight exaggeration but you get my point!)
3. Do – Plan when to start Kaftrio
This will generally apply more to older and more congested or productive lungs…. But plan when to start your Kaftrio and
make sure you have a couple of quieter days to ‘enjoy the ride’.
People can feel quite rough for the first few days. Whether it’s the extra coughing and sputum purge, or headaches as your body adjusts, it’s worth starting Kaftrio on a few days you have a bit less on. Probably best not to start it on a week which involves important meetings, and days out (if only – remember those days!!).
Make sure you have plenty of sputum pots (if that’s what you use), and/or tissues, as it’s likely you’ll be coughing more than usual. Ensure you are stocked up on your favourite non-alcoholic drinks (save the booze until you are settled!) and snacks.
4. Do – Hydrate, hydrate, hydrate when starting Kaftrio
If in doubt, drink more water, squash, fruit teas or whatever you’re partial to. Your body is going through a big change. If you are experiencing side effects, one of the best things you can do is make sure your body is well hydrated – without trying to sound like your mum.
Some people find Kaftrio can make them constipated initially so increasing water will help this issue too.
5. Do – Keep a diary when starting Kaftrio
“Dear diary, I can’t stop thinking about Max. His beautiful black hair was blowing gloriously in the wind today” – No, not that kind of diary, although why not?!
If you find you are suffering with side effects, it’s worth making a note of them, their severity and duration. Hopefully, you’ll only get a day or two’s worth (if any), but it’s really useful to have some kind of timescale of when and what happened. This way you can see if things are getting better or worse, and have more info to tell the doctors when you speak to them. I started just kept notes on my phone which did the job.
6. Do – Take things day by day when starting Kaftrio
If things aren’t working, do not worry and rush to decide Kaftrio isn’t for you. There are different ways of treating problems and doses can be altered or reduced. Most of the side effects are short-lived, so try and take things day by day.
If things are really not going well, of course, get in touch with your team and they should be able to help.
I found a lot of help from joining a Facebook group… mainly made up of members from the US who have been on Trikafta a while. There is nothing more reassuring than finding out others have had similar issues to you. Search: Trikafta Cystic Fibrosis on Facebook to find the group. Instagram has a lot of people sharing their stories too, so it can be helpful to compare (honestly, I recommend doing this after you have started, rather than before you started, as mentioned in number 1).
7. Don’t – Forget the CF community who can’t take Kaftrio
Hopefully this drug will be amazing for you, and a lot of the CF population. But let us not forget those whose gene mutations Kaftrio doesn’t work for, or those who are unable to tolerate it. Or those who we lost before they were able to start Kaftrio.
Over to you…
Have you already started Kaftrio, or did you start it when it was called Trikafta?
Anything I have forgotten or you would add to help people starting Kaftrio soon? What advice would you give to others starting Kaftrio soon?
Please leave a comment below!
P.S. Did you find the Oasis song title within the content above – fun fact it was their first number one single and was 25 years old earlier this year! Within the sun is the lyric “Some Might Say we will find a brighter day….” – hopefully Kaftrio will give CF patients that brighter day!