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Trikafta update and a tough decision….
I had CF clinic yesterday and here is the biggest takeaway: sometimes we have to do hard things and it’s okay to have mixed feelings about something.
I’ve talked a lot about the benefits I’ve experienced on Trikafta. I am endlessly grateful for the ways in which it has improved my life with CF. But at the same time my physical health has been improving, my mental health has been declining. Recently, that decline has been more rapid and noticeable, negatively affecting my daily life and relationships.
For a long time, I tried attributing some of the issues to stress or simply feeling anxious about life in the time of COVID. But I’ve also worried (and deep down, I think I knew) that it was at least partially related to Trikafta. The symptoms have become too much to ignore, so yesterday — with the wise and caring guidance of my incredible doctor — I made the decision to lower my Trikafta dose.
I am not stopping entirely and we aren’t certain that this change will minimize the negative side effects. There is also the chance that lowering my dose will mean I receive less benefit and some of my old physical symptoms may return. But I feel like it’s worth a shot and I’m approaching this change with optimism and hope. I’ll admit, I cried a lot yesterday. There are worries, heartache, and a little mourning happening right now along with hope for a better balance between my mental and physical health.
I share this here because I’ve been transparent about Trikafta journey on this platform, and I think it’s important to be realistic about the unpleasant parts of it as well. I know several others who have struggled with mental health, have needed to stop taking Trikafta, or who have adjusted their dose to mitigate negative side effects. I never want to influence anyone’s decisions or suggest that their experience might be the same, but I also think we can learn so much from one another as we navigate this new territory. I will continue to update as I move forward on my adjusted dose. Thanks for reading.
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13 Replies
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Thank you very much for sharing this, Jenny, I am sure this will be very helpful for many users.
I think it is a wise decision to make a change in your health-balance if you are not happy with it, and since trikafta is probably one of the more influential elements in this balance there is a lot to be said for starting there.
I hope this will improve things for you in the desired way. Finetuning medication to the individual body-mind is an art of itself, and the only way to do this is, is by experiment – and you are the only one to carry out the experiment. We adjust our intake of food and drink and sleep and oxygen all the time, according to our present needs – so why would medication be any different? The advised doses of many medicines is often rigid and based on a small amount of experimental data from trials with limited groups of patients. No surprise that individual finetuning in the real world setting is often needed and desirable. Take as much as needed and as little as possible.
I used to feel anxious about deviating medication dose from the normally prescribed setting, but with time and experience and growing older – read: stubborn/wise 🙂 – I am much more relaxed in this and it has benefitted my health. In the course of my life, I have been taking combinations of medication and dosages that were totally beyond the normal prescriptions (all in good consultation of my doctor, but often with a lot of my own research). Trikafta in a way, as I see it, is still an experimental drug, so by all means, let’s experiment a little if needed.
Listen to your body-mind and act accordingly, be as present as you can without making too many stories about it. A curious and compassionate attitude is often the best way of approach. Trust your body, it has many ways of reacting to medication and establishing some sort of balance, and feel free to play a little with these possibilities to find out a point where you feel the most comfortable. With the feedback of your own body-mind you are the only one who is able to holistically incorporate all that is happening there.
On a side-note: I hear a lot of sleeping problems due to trikafta. For me, not sleeping well is a major trigger for mental instability. If the body is tired, the mind starts running. I also recently read a post from a patient on trikafta who solved his sleeping issue by taking the doses earlier in the evening. He switched from a 11 a.m./11 p.m. scheme to 8 a.m./8 p.m. and it much improved his sleep quality. Reading this, I already made up my mind for doing this as well when I start trikafta next month.
Good luck and keep us posted!
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Thanks so much for this response, Paul. It’s been an interesting journey; listening to my mind and body have been critical. Thanks also for the reminder to not tell myself stories. I need to drop any expectations and refrain from clinging to any story.
The lack of sleep has been a huge problem for me. For the first 5-6 months after starting, my insomnia was so terrible. I did all the things I could think of (limiting caffeine and screen time, taking melatonin, meditating, using a comforting sleep mask) and eventually asked for a sleep aid (which not only didn’t seem to help, it left me feeling groggy the next day so I didn’t use it very long). Eventually, things seemed to improve… until the last couple months. My team also mentioned that some have switched the am and pm doses to help with insomnia, which is something to keep in mind as well.
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Sorry Jenny that you have had such ‘side effects’. As they say in Swahili ‘pole sana’ – a term of condolence that you may use in all circumstances from stubbing your toe to losing your mother-in-law.
Not surprising to see such side effects considering the breadth of effects that the faulty Chloride transport in CF may be expected to have. Headaches and neurological signs may be expected as the Trikafta normalises electrolytes in the brain cells. Reducing the dose may be expected to reduce the progress . After a time on the lower dose you may be able to go up again with fewer side effects.
Keep paddling!
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Thank you, Tim. I am hopeful that this dosing adjustment will help. It’s also nice to think that one day I might be able to resume the full dose, or even better, that we’ll have learned enough to dose in a more individualized way. Thanks so much for your support and kindness.
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Thank you, Tim. I am hopeful that this dosing adjustment will help. It’s also nice to think that one day I might be able to resume the full dose, or even better, that we’ll have learned enough to dose in a more individualized way. Thanks so much for your support and kindness.
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Jenny, Such decisions like this are never easy. I hope you can breathe easier now that your decision is well thought out and over. Here’s a simple Buddhist prayer, author unknown:
May you be filled with lovingkindness;
May you be well.
May you be peaceful and at ease;
May you be happy.
I am not preaching any particular religion here. I have studied many. Huston Smith, who used to teach at Syracuse University near me, wrote a wonderful book about the world’s religions. There is much to love about many of them. I just love this prayer and say it constantly for “all living beings.”
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Judy, thank you, thank you, thank you. This is beautiful and I appreciate you taking the time to respond. I am truly grateful for these words and your kind thoughts.
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I am happy to write something to you that is helpful, Jenny. Let us know in a few months how it is going for you.
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Forgot to mention that it’s not a coincidence that being filled with lovingkindness comes before being well.
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Hi Judy, I doubt if the old Buddhist poet thought about the order. ‘May you be peaceful and at ease’; and ‘May you be happy’ may also precede ‘wellness’. I have known some amazing persons who despite severe illness were content and happy. Being well is the one attribute here which we may have no control over. We can determine to show loving kindness, be peaceful and at ease and be happy though it can be difficult.
I love the Prayer of St Francis:
Lord, make me an instrument of your peace: where there is hatred, let me sow love; where there is injury, pardon; where there is doubt, faith; where there is despair, hope; where there is darkness, light; where there is sadness, joy.
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Thank you for mentioning this, Judy, beautiful! It is a powerful meditation. And of course it can be used as a prayer.
This Metta (or Maitri) meditation originally regards the Brahmavihara: it is the first of the four immeasurable sublime states of the Self: metta (love, lovingkindness, benevolence), karuna (compassion for suffering), mudita (altruistic joy) and upekkha (equanimity). Health (being well) is originally not included, because this is a measurable state of the body-mind. Its origins can be found in Buddhism, Hinduism and Jainism.
In practice, these wishes can be and have been extended to all kinds of more earthly goodness and happiness (including health), and they are meant to be repeated in a circular motion that increases the scope of love in every new motion. So, one can start by wishing goodness to oneself, then extend it to family, to relatives, to strangers, enemies, the world, the universe etcetera. In this circular motion of repeating, any suggestion of order of the wishes disappears, for every point on a circle is as much before as after every other point.
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Tim
<div> I also love the Prayer of St Francis. My husband and I said it at our wedding. Still love the Buddhist prayer, too, and believe the poet thought about the order. I am not a religious person and do not adhere to any specific religion, but I think I am a spiritual person. There are many treasures in the different religions.</div>
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<div> I assume you have CF or are close to someone who does. All the best to you.<br clear=”none” />
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<div>Jude<br clear=”none” /><br clear=”none” /></div>
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Paul Met Debbie,
I’m not sure I’m speaking to just Paul or just Debbie or Paul and Debbie. Which one of you has CF, or do both of you have it?
Anyway, I want to thank you for the comments. I loved studying Hinduism and Buddhism. No very little about Jainism. Have studied The Bhagavad Gita and parts of The Upanishads. I really liked the translation of The Bhagavad Gita by Eknath Easwaran.
Thanks again. I think that a lot of people in the US do not realize the beauty of the Eastern religions. There are beautiful parts of Christianity and Islam, to be sure, but the Eastern religions add much to the beauty of spirituality.
Jude
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