Pulmonary Fibrosis Meds

Posted by grrranny @grrranny, Mar 21 3:38am

Hubby and I will be seeing his pulmonologist tomorrow for suggestions on pulmonary fibrosis meds to help with his breathing.
Anyone have experience with these?
Which have the fewest side effects?
Which should be avoided?
Does Medicare cover drugs like Esbriet and Ofev? Are they better than steroids?
Many thanks!

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Some medications, if insurance doesn't cover, have foundations that will cover it for you if your income is below a certain level.

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there are only 2 that i know of both jut slow progression

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@package81

there are only 2 that i know of both jut slow progression

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Slowing progression would be better than nothing, right?
But are the side effects worth it?

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I have been taking Esbriet for the last three years. It has very helpful with no side effects.

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A friend chose Ofev because of fewer pills per day. He lasted 3 months on it because of the side effects, including the liver. He hasn't tried Esbriet so I will tell him that at least one person has been successful using it. Both meds are very very expensive and don't hesitate to ask your doctor how to file with insurance to get the cost down. He didn't qualify for foundation help but definitely look into that option. I also don't know if the Canada Drug Warehouse offers either med. They have members in many countries all over the world so maybe they can offer an option. I get my generic Eliquis through them.

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@grrranny

Slowing progression would be better than nothing, right?
But are the side effects worth it?

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My husband tried both drugs. However, he decided that the side effects were not worth giving up quality of life. I actually think it was too late for the drugs to help him.

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I've been taking Pirfenidone (Esbriet) for a year and a half, with very few side effects. (For a while, it seemed to affect my sleep, but that went away.) My health insurance covers it with a modest copay, but I don't know about Medicare. I need to find out soon, as I may be transitioning soon when my wife retires.

Does it help? There's literally no way to know, since at best it slows down the progression of the disease. But I've been pretty stable, so maybe that's at least partly because of the meds.

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I have been taking Ofer since mid December 2023, so far the only side effect I have had is occasional diarrhea which I have been able to manage with a better diet which is part of preparing for a transplant so that worked to my advantage. My bloodwork so far shows no detrimental effect on Liver function, and will continue to be monitored every 3 months. I am also holding steady with my lung function tests as well. I am currently going to Cardiopulmonary rehab 3 times a week, and am progressing at a decent rate. I also qualified for a program Ofev has that covered my insurance copay completely so I have $0.00 out of pocket. I know that other patients have had side effects, each month a Pharmacist from the specialty pharmacy calls me to check on how I am doing on the Ofev so I am one of the lucky ones so far!
Hope this helps.

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