September 24, 2021 at 3:03 pm #17492Jenny LivingstonKeymaster
As mentioned, yesterday I had CF clinic and I fully expected to learn that my lung function was down a bit. After lowering my dose of Trikafta I began having increased sinus and lung symptoms. I attributed this to the change of dose, which I fully understood to be a potential trade-off for the improvements in my mental health side effects.
Much to my surprise, my PFTs were actually up a smidge! After talking it out with my doctor and pharmacist (my CF team has a dedicated pharmacist who has provided care and invaluable insight to me for the past 14 years or so), we determined that the cause of my respiratory symptoms is likely poor air quality/allergies/wildfire smoke. I am very prone to inflammation and have quite sensitive/reactive airways, so this makes sense. We’re adjusting some of my asthma meds for the time being to see if that will help ease some of these lung symptoms.
I don’t know how to adequately express the gratitude I feel right now. I am still benefitting from Trikafta, even at a lower dose, and we’ve found a balance that works for my mental health as well. I feel so fortunate and privileged that this is the case.
In the spirit of expressing gratitude, rather than our usual Weekly Wins post, I’d like to ask what you’re feeling grateful for right now? Will you share three things, big or small, that fill your heart with gratitude?
Mine are here:
1) Yesterday’s surprisingly good appointment
2) The health of my family; staying well during this pandemic is something I’m always thinking about and feeling grateful for
3) The weather is cooling down and I was able to spend a couple days in the mountains. Nature has a way of grounding and centering me, and I’m always grateful for the time I get to spend basking in my natural surroundings
What about you?
September 27, 2021 at 5:03 am #17501Paul met DebbieParticipant
That’s wonderful news, Jenny! You seem to have found a good balance again. How is your current Trikafta dosing different from the standard?
It’s my experience as well that bad air quality can influence my airways. For that reason we have an aircleaner/moisturizer in the living room and the bedroom working around the clock, with a hepa filter keeping humidity around 55% and cleaning the fine dust and pollen out of the air. Debbie also benefits from this, being slightly asthmatic and having a light hay fever in spring. The overall air quality in the Netherlands is reasonable, but only according to the official standards that don’t measure ultra fine dust. Mostly the wind blows from the southwest and this sea wind is fairly clean. However, being close to Germany where there is a large industrial zone nearby that is powered mostly by coal (lignite), when the wind changes to east in midsummer or midwinter, the air quality drops noticeably.
I reckon Trikafta can also change the sensitivity patterns of the airways. After all, a new type of airway lining will occur that will have different characteristics from the old cf lining and we have to adapt to that. Or, cf might have hidden other problems that now will come to surface more clearly. Since taking Kaftrio, my eyes air considerably more prone to inflammation, the lower eyelids are slightly irritated and more wet. So far it is the only side effect I can mention. I take some antihistamine for that (levocetirizine – Xyzal) which helps. And I continue to use becotide pufs for my nose and sinuses.
Answering your question: I am always grateful for just being – in all its aspects. Everything we encounter, is a doorway to liberation. So I am grateful for Kaftrio, for my runny eyes and for this conversation.
September 27, 2021 at 8:39 am #17506Jenny LivingstonKeymaster
Paul, we reduced my morning dose by half, so I am just taking one orange (I’ve also heard it called yellow or peach colored?) pill and the full evening dose (blue).
I’ve heard of people having irritated, dry, or inflamed eyes while taking Trikafta/Kaftrio, so it’s interesting to me that you mention it here. I’ve had all of those issues with my eyes since childhood, so no noticeable change for me in that regard.
September 27, 2021 at 8:12 pm #17510Tim BlowfieldParticipant
Thanks Jenny and Paul,
Your discussion of what has happened post starting trikafta/kaftrio is very important. May be CF was was protecting you from other respiratory problems. (Sickle Cell Anemia largely protects against malaria. Not sure which is better!) Such protection can lead to selection for a mutation – what may CF do?
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