There is so much unknown about Pulmonary Fibrosis, and a general lack of knowledge about the nature of the disease and how it relates to other diseases.
In medicine not everyone reacts to a disease in the same way. Not everyone gets the same symptoms, and a treatment which helps one person doesn’t necessarily help everyone else.
Currently there are no treatments which stop fibrosis or reverse fibrosis.
With pulmonary fibrosis, whilst the fibrosis can appear to reduce the volume of the lungs, it doesn’t always do so significantly, and can also sometimes only reduce the volume in the very last stages of the illness. Fibrosis makes the wall of the lungs - the interstitium - less flexible and thicker, thus making it harder to breathe, and making the person more breathless when exerting themselves.
From observation it would seem that getting the right nutrition is extremely important. Rapid weight loss is not good and can result in a very poor prognosis. I have known several people on Nintedanib who have suffered with stomach upsets, including severe diarrhoea, and not lasted long, I suspect because they have persevered with the medication for too long and their organs have suffered as a result.
I believe that when a patient is being seen by a specialist centre, then that specialist centre should look after the whole health of the patient. Currently there is a game of symptom ‘ping-pong’ with some aspects of a patients health being looked after by a GP, and the fibrosis being monitored by a specialist. The problem being that the GP, who will be asked to advise on nutrition, blood pressure, weight management, cough and other things generally has little or no knowledge of PF and its treatment.
The patient is left with a dilemma in that he doesn’t really know who he should approach when symptoms worsen suddenly.
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