[neha]

Hello,

I consulted a pulmonologist at my work and here is what she said about the difference between a cough caused by IPF vs bronchitis. THe difference is in the pathology. IPF tends to have a dry cough whereas bronchitis can be a cough heavy with phlegm. Also in IPF, cough is not improved with bronchodilators because it is not an airway problem where as bronchitis is an airway problem and cough usually responds to a bronchodilator. Additionally, IPF cough progressively gets worse as the fibrosis gets worse but with COPD, viral or asthma bronchitis, the cough can be stablilized to a certain degree.

Hope this helps.

[neha]

Hello,

Here is a link to a blog on the Pulmonary Fibrosis NOW! website that has patient recommended resources to help with medication costs – tips shared by our community members, hope this helps: https://pulmonaryfibrosisnow.org/2022/12/30/how-to-access-affordable-pf-prescription-medications/

pulmonaryfibrosisnow.org

How To Access Affordable PF Prescription Medications | PulmonaryFibrosisNow.org

The tips in this article were created by community members in our online forum and compiled by our dedicated volunteer Parshwa Parekh. Thank you to everyone who shared their time, knowledge, and experience to help make PF treatments more accessible … Continue reading

[neha]

Hi Gavin, I believe a pulmonary rehabilitation program will be of benefit to you. It can help with shortness of breath, feelings of anxiety and depression, increase muscle strength and your ability to do things, teach you about nutrition, breathing exercises for when you are experiencing breathlessness etc. Here are some informational blogs about it: https://pulmonaryfibrosisnow.org/2022/06/02/pulmonary-rehabilitation-and-pf/ and https://pulmonaryfibrosisnow.org/2020/03/06/what-is-pulmonary-rehabilitation/

Here is a link to some breathing exercises that can help improve your oxygen levels and help calm you: https://pulmonaryfibrosisnow.org/learn/exercise-your-lungs-2/#excercise

Hope these resources are useful for you. Also, hope your appointment with the nurse gives you some answers.

[neha]

Hi, here is the link to a blog where we put together patient recommendations for accessing affordable prescription meds for PF: https://pulmonaryfibrosisnow.org/2022/12/30/how-to-access-affordable-pf-prescription-medications/ Hope this helps.

[neha]

Hi Amit, If it’s allowed on this forum, I’d like to share a small research study that looked at the effects of a 3 month supplementation of serrapeptase and nattokinase on people with PF. The treatment resulted in improved symptoms and quality of life in a majority of participants. Here is a link to the publication: https://www.mdpi.com/2305-6320/8/11/68

Hope you are able to find something that helps.

[neha]

Hello Marianne, it seems like your doctor is advocating for what you need, which is great. Are you able to share a recording of the presentation, if you have it? It would be great information to learn about and share.

Thank you so much and have a great weekend.

Warm regards,

Neha

[neha]

We hope to have some answers to how serrapeptase and nattokinase work and their effects in patients with IPF by the end of this year.

[neha]

Hi Charlene, there is a lot of historic and anecdotal evidence on the benefits of protease enzymes on fibrosis and lung health. We did conduct a research study on serrapeptase and nattokinase and have seen very encouraging results (currently preparing the manuscript for publication) based on which we have initiated another larger, longer-term study to research the effects of these enzyme supplements on fibrosis, symptoms and quality of life in patients with IPF. If it works as expected, it could be a safe and effective alternative for patients.

[neha]

Thank you Charlene for your suggestion of putting the name of the enzyme in the search box. I am new to this forum, so that definitely helped me navigate.

[neha]

Hi, if anyone is open to trying natural supplements, my research has shown that Serrapeptase (an enzyme supplement) is beneficial in thinning mucous, making it easier to expel.

[neha]

Hi Millie, our non profit, Pulmonary Fibrosis NOW!, has an ongoing clinical study  examining the effects of serrapeptase and nattokinase in people with IPF. A majority of the participants enrolled were already taking esbriet or ofev. All patients are under the care of their pulmonologist and so far we have not had any patient discontinue due to drug interactions or side effects. I must add that the enzyme supplements are taken on an empty stomach either 2 hours after or 1 hour before their meal and/or other medications. We will be happy to share the results on this forum once the study is completed and published, hopefully by the end of this year. Meanwhile, hope you are able to find something that works for you and helps you.

[neha]

Hello Terry and Bill,  Measuring progress regularly is an important way to gauge how you are doing, especially if you are trying a new medication/supplement or a breathing technique etc. Here is a link to 2 simple ways to measure your progress including charting your oxygen saturation levels at various times daily and by using the 6 minute walk test (6MWT) at home: https://pulmonaryfibrosisnow.org/basics-old/how-to-measure-your-progress/#measure Hope you find it helpful

[neha]

@marianne

Hello Marianne, here is a link to an article which talks about supplemental oxygen devices that you may find helpful before you have that conversation with your doctor: https://pulmonaryfibrosisnow.org/2019/04/05/supplemental-oxygen-tanks-vs-concentrators/ Using supplemental oxygen will definitely allow you to be more active and do more. Good luck with your appointment. Neha