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  • Vent session: my frustrations with lung pain

    Posted by jenny-livingston on December 10, 2020 at 10:58 am

    Lung pain. I’m guessing that most of us here are quite familiar with it.

    For years, I’ve had pain in two specific places (sometimes, other places as well, but these have long been known as my “bad spots”). It always made sense to me, what with the scarring and bronchiectasis we know I have. I was always pretty in tune with what was happening in those areas and when I had a pain flare up, I could do extra treatments and some targeted CPT to work mucus out of those bad areas, relieving some of that pain.

    When I started Trikafta, the pain in my chest increased. Not only in those areas, but all over. Again, this made sense to me. I talked with a care provider who agreed that Trikafta could cause things to change — more air and mucus movement in areas where that wasn’t happening before — which can be uncomfortable or even painful. Two months later, as the pain continued, I had some imaging done in an attempt to find the cause. We found a spot of pneumonia which was a surprise to everyone, but it wasn’t near either of my painful areas and we determined it was likely not the cause. Now, nearly a year later, I still experience the same pain off and on.

    Here’s the extra frustrating part for me — I used to be able to work extra hard to get mucus out of those areas to help with my discomfort, but that no longer happens. As I’ve mentioned before, I have little to no mucus production! I’ll go for months without coughing anything up, not for lack of trying. It simply isn’t there anymore! While this is absolutely incredible, it also leaves me questioning… what is causing the pain?

    Yesterday, I discussed this with my doctor during a telehealth appointment. She shares my confusion. Together, we looked at my most recent CT scan and while there are some visible abnormalities, once again, they don’t seem to be related. *ugh*

    Do you experience pain like this? How do you treat lung pain? Have you had pain that simply doesn’t resolve, even when there’s not an explanation for it? 


    daryn-body replied 4 months, 3 weeks ago 5 Members · 5 Replies
  • 5 Replies
  • paul-met-debbie

    December 11, 2020 at 10:21 am

    Yes that must be frustrating not being able to influence a symptom anymore that seemed to be more of less under your control. Not being on trikafta, I can recognize your “old” lung pains and the ability to improve it by clearance.

    If other causes of chest pain are excluded, in many cases chest pain comes from the pleura. As known, trikafta results in influencing the water balance in the mucous fluids of the body by improving chloride ion traffic. It is very well conceivable that trikafta also influences the pleura. This might be some sort of inflammatory reaction or just pressure differences because of different fluidity of the moisture between the pleura.

    Personally when a new problem arises and the doctor doesn’t know either, I am not afraid to experiment a little myself. In this case I probably would try some anti-inflammatory medication, starting with nsaids (ibuprofen or diclofenac) and proceeding to a low doses of oral prednisone if needed. Just to see what happens. If the pain goes away, it might be an inflammation after all. Also I could imagine, if no longer productive on mucus, to diminish nebulizing medication like NaCl or Salbutamol.

    I developed a considerable chest tightness some years ago, probably related to nerve damage from antibiotics. Pulmonologist nor neurologist had any useful suggestion. I then started some experiments with anti inflammatory medications that really suppressed most of the symptoms. After a while I could reduce the intake little by little to a minimum that is sustainable as chronic medication. The tightness is still there, but much reduced and very manageable.

    I wonder whether Vertex keeps track of all the side effects that, accumulating the time and numbers of patients on their medication, present ever more clearly. Or if there is scientific research being done on these?

    I hope some patients that are on trikafta and have the same symptoms would react to your post. Perhaps some hacks are already being shared.

    • jenny-livingston

      December 14, 2020 at 8:51 am

      Paul, I believe the pain I experience now is indeed inflammation. The things that help me most are an NSAID (as you suggested) and heat applied to the area.

      I know that Vertex encourages individuals who experience side effects or mysterious symptoms to report them directly to the company. However, I would imagine that many people are more inclined to discuss these things with their doctor rather than report to Vertex. I’ve read many posts online about some very serious side effects (neurological, hormonal, etc) and when I ask if they’ve reported their symptoms, the answer is generally, “I’ve talked with my doctor about them.” I, too, hope that Vertex is able to gather enough information to study these things.

  • J-P

    January 24, 2024 at 8:44 am

    Hi Jenny and Paul

    I have this pain you are describing since 6-7 months after Trikafta in my upper lungs and bronchi my Dr. they are not sure what to do, do you guy’s have any update on your pain medication that help? any help will be greatly appreciated. thx

  • Timothy Bransford

    January 25, 2024 at 2:41 pm

    In my experience, focused chest pain has always been an indicator of mucus blockage, infection, and ultimately, hemoptysis. I believe the conditions in my lungs impact the pleura and the result is pain sensation. I ran this by my CF doc and he agreed this could quite possibly be the mechanism that causes the “lung” pain.

    Regardless of the exactness of this conclusion, the reality exists that when I experience pain in my “lungs” I must take action if I hope to avoid a hemoptysis episode. Agressive airway clearance oftentimes helps. If that does not do the trick then I reach for oral antibiotics. If that does not work then I usualy experience hemoptysis.

    I have noticed a slight reduction in instances of chest pain since starting Trikafta. However, I still have sputum production (albeit at a reduced level) so it is possible that my mutations/lungs react to Trikafta differently than yours.

  • daryn-body

    January 26, 2024 at 5:59 am

    Hey all! It’s been a minute since I was on here. Trikafta has changed everything! I find that my body reacts so differently than before. All mostly for the good!

    It was my understanding that the lungs can’t actually feel pain; but the surrounding musculature and tissue can as a result of inflammation or tightness; etc. I have always had painful spots that almost seem to “pop” when the hurt starts. The pain is unbearable for the first few seconds and because it is sudden onset, debilitating sometimes. It occurs in the interstitial space between the ribs in the muscle. Almost always it is relieved by massage and stretching. Before trikafta I had more spots variously located around the front chest wall on both sides. Now it seems to occur only on the right only and much less frequently. If I haven’t been keeping up my exercise and stretching routines; it tends to flare up.

    Sometimes if I wear a mask for a prolonged period the pain seems to pop off. Probably due to the diminished breathing capacity and labored breathing.

    I do find that albuterol helps because of the relaxing effect from opening up the airways.

    Great discussion point Jenny!

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