My suggestions to lower your chance of getting respiratory viruses are the following, in order of importance: get vaccinated, wear a mask in crowded places (supermarkets, theaters, subways, buses), wash your hands often & do not have contact with those who have symptoms. If you do contract either flu, take Tamiflu, or covid (Paxlovid) within…

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I recently developed traction bronchiectasis as an unfortunate complication of my IPF. The traction bronchiectasis was accompanied by increased mucus production, causing a decrease in DLCO. Pulmonary rehabilitation has been helpful with providing instructions regarding the proper way of using mucus clearance devices, like a nebulizer…

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The high caloric diet & supplements like Ensure are good suggestions but many PF patients have lost their appetites & cannot consume a lot of food. It is very depressing when weight loss continues despite your best efforts. My husband didn’t even want to look at himself in the mirror.

Incurable, debilitating, fatal, underdiagnosed,

Another harsh reality of lung transplantation is susceptibility to infection by bacteria, viruses and difficult to treat fungi or non tuberculous mycobacteria. Infections can be a major cause of graft failure. Due to lifelong immunosuppression, transplant patients are prone to develop infections that are often innocuous to immune competent… Read more

Please note that vasoline should not be used in the nose because it is a petroleum gel product. Seek gel that are petroleum free. Be well.

Gail,
For diagnosis of pulmonary fibrosis you need a CT Scan, pulmonary function tests & possibly a  biopsy. Make sure your primary clinician is a pulmonologist who is knowledgeable about PF & IPF. X-rays are not useful for PF diagnosis. Good luck.

Kathy, I was in error of posting that there is a nebulized form of Ofev. I do not believe there is one. A participant on this forum posted that there is an ongoing clinical trial, in the UK I believe, with Esbriet. I called Genentech USA, the manufacturer of Esbriet,  to ask if there were clinical trials in the US and they said there were… Read more

Thank you Bernard for the correction! Nebulised Esbriet should alleviate the nausea & GI side effects. Hope it will become FDA approved in the US. My husband has inflammatory bowel syndrome & the pulmonologist has been hesitant to prescribe the anti fibrotics, especially Ofev.
Hoping that 2022 will see an end to this pandemic!

Excellent news that there is now a nebulised formulation for Ofev. It’s about time. The gastrointestinal side effects of these drugs are dreadful, necessitating an alternate route of administration. The companies should investigate intradermal or intramuscular as well as the nebulised form. Any route of delivering the drug is better than the GI… Read more

Jeff, Yes, PF has been detected not only in COVID “long haulers” but those survivors who were on ventilators. In addition, veterans who were exposed to “burn pits” where plastic & other toxins were burned also exhibit pulmonary fibrotic disease. It fact, the latter was featured on a TV episode in Grey’s Anatomy here in the US. Awareness will… Read more

Tom, Sorry to hear you needed pulmonary surgery. I am sure you can start your exercises alittle at a time. BTW, we live in NYC.

Judy, you are blessed to be able to live life to the fullest. So glad your PF is not progressing. Keep living life to the fullest.

It is very disappointing that the manufacturers of Ofev & Esbriet have not researched an alternate route of transmission of these drugs (i.e.transdermal)or at least alter the drug formulation to decrease these side effects. When taken orally they wreak havoc on the gastrointestinal tract, upsetting the microbiome. Tolerating the dreadful… Read more

Roseanne, elevation of the upper torso is helpful in sleeping through the night. My husbands sleep dramatically improved since we purchased a bed that elevates the upper torso. An additional advantage is prevention of micro aspiration of gastric fluid (asymptomatic or symptomatic GERD) into the lungs which is thought to contribute to the… Read more

Pete, Pulmonary Fibrosis has been an unfortunate complication that some COVID  patients, particularly those who have been on a ventilator, have experienced. Perhaps COVID funding will be utilized to pursue research into curative PT medications. We can only hope.

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… 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.… 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… 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… 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… Read more