Phyllis Della-Latta

I would not rush to use the N115 nasal spray until it is FDA approved and there until there are peer reviewed scientific publications to substantiate its claims. I contacted the Pulmonary Fibrosis Foundation team voicing my concerns when the article first appeared in the Oct 11 PF News. A nasal spray that can increase the FEV1/FVC ratio from 52%…[Read more]

Hi all,

I was told by my husbands  pulmonologist & that raising the head of the bed 4-6 inches is ideal to reduce symptomatic or asymptomatic GERD. It can prevent microaspiration to the lungs which is thought to worsen the fibrotic progression. I was thinking if buying the sleep number bed where the head (& foot) elevation is adjustable. There…[Read more]

My husband was diagnosed with Pleuroparenchymal fibroelastosis (PPFE). He has a chronic cough and no symptoms of GERD. However, we were considering purchasing a Sleep Number bed with a FlexFit adjustable base for head elevation due to the correlation of GERD with IPF. Although a causal relationship has not been demonstrated, the hypothesis that…[Read more]

The link below opens to a good article providing scientific evidence for the association of GERD with IPF. Also it includes good references. I tried posting the references but this website won’t send them for some reason.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6733342/pdf/tcrm-15-1081.pdf

Great! I will do some searching as well.

Hi Christie, I wonder if there are  doctors on the advisory council of the PF foundation & i hope they follow these email threads. If so, it would be helpful if they could provide us with peer reviewed scientific articles explaining the GERD-PF correlation.

Michele, Prilosec is a brand name for the generic drug omeprazole. This anti-GERD medication should be available to all. Apparently there is coughing due to PF is associated with either silent or symptomatic acid reflex. Does anyone know if there is scientific data that confirms this?

People with compromised lungs predispose to infections. The antibiotic of choice to cure the infection will be determined by the identification & antibiotic susceptibility tests (AST) performed on the bacterial pathogen growing from your sputum or bronchoscopy specimen. Pseudomonas is often resistant to many antibiotics, so lab ASTs will be needed…[Read more]

A diagnosis would require Pulmonary Function Test (PFT), CT Scan, X-ray, oxygen saturation levels & extensive blood tests. Sometimes a definitive dx requires a bronchoscopic biopsy or samples of lung tissue obtained by video assisted thoracic surgery (VAT).
You would need to ask the pulmonologist what tests will be ordered.

Hi Augusta, My husband has a form of PF called Pleuroparenchymal fibroelastosis (PPFE). He also gets coughing spells, particularly at night that is not helped by cough drops or honey. Robitussin Nighttime Cough DM seems to work. Chewing gum often alleviates his cough.

I am also interested in connecting with others about their PPFE disease progression, treatment regimens and clinical trials. After a VAT lung biopsy my husband was diagnosed with this rare disease. He had a working diagnosis of IPF for the last years along with other pulmonary findings. ANCA serology tests just converted to positive sugggesting…[Read more]