I am thinking that pulmonary rehabilitation should be the most important and earliest treatments offered to anyone with a pulmonary fibrotic condition, regardless of etiology and prescriptions.

Learning from therapists how to improve airflow for breathing and speaking seems like an obvious best practice that should be offered to all patients.…

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My husband was in perfidone for 5 months. This is what we experienced. Wear sunscreen all over his body everyday. Where a hat & full body coverage at all times. His skin could be exphoto sensitive. My husbands stomach was a wreck but it ebbed & flowed. The worst part was when he went to the driving range with sunscreen on, but forgot his hat.…

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I have been getting Perfinidone from Mark Cuban CostPlus Drug Co since Jan 2024. 90 of the 801mg Tabs cost $199.40 plus $5 shipping.

Hi Margo,

I heard the list of things that you were trying to do for your husband. You are trying to do everything all at once, and it doesn’t sound like you’re doing anything for yourself. Maybe he doesn’t want his life and that way. If you’re trying to do every thing all at once, it’s hard to do any of them well. my recommendation to you is to…

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My husband began Esbriet about 6 weeks ago. The beginning was hard. He was breathless and exhausted by doing things he could easily do pre-Esbriet. Even knowing the side effect of fatigue, neither of us could possibly know that it’s something that we would need to plan 2-3 resting times in our daily lives. He also has severe diarrhea from the…

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It’s not easy but with acceptance of what is now, comes an opening of the spirit and it can lead you in many directions. I love this forum!

For the first 2 years my husband was asymptomatic and was being monitored every 6 mos with CT scans & PFT by pulmonologist. Now there is progression and he was put on Esbriet. One of the side effects is fatigue. He has spurts of energy and takes several short naps between activities. Good luck. I’m reading as much as I can, making healthy meals…

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Me too! Wordle, Spelling Bee, Connections & Mini Crossword.

Thank you everyone for your experience and objectivity in this area. I’m learning so much from reading these posts.

I think anyone who has had pneumonia, serious bronchitis or Covid may show scarring in the lungs without being symptomatic for IPF. I really appreciated your posts. Perhaps today’s drs are not adjusting thinking to new sources of fibrosis with great PFT and no other symptoms?

Then you have good insurance! We are on Medicare and use our part D provider. I’m wondering if anyone has tried getting these meds in Canada?

My husband’s IPF was linked to a high RH factor. He went to a rheumatologist & rheumatoid arthritis was confirmed. Pulmonologist in Miami did a bronchiostomy it was negative. Up to this point he was asymptotic for IPF and RA. His calcium score was high on the heart scan.

My husband was asymptomatic and put on Esbriet. He’s been going down hill rapidly. He’s tired & breathless 50% of the day.

We were Amazon Pharmacy customers. When my husband was prescribed Esbriet the price was a shocker. He researched every option. Mark Cuban Cost Plus Pharmacy was the lowest. So far the service is good. Not sure if you can order it from Canadian Pharmacy, it potentially could be even less expensive.