Pulmonary Fibrosis Meds

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

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

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

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

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.

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.

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.

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.

Hi there, if you haven't checked yet...you can go to the Medicare site to check on drug costs. Medicare has an excellent tool where you put in your drugs, and it tells you what the cost would be for various plans/pharmacies in your area. It is important to check each year, because drug plans change, and you may find a cheaper one for the following year.
I am checking now because I will need to start either OFEV or Pirfenidone (brand name is Esbriet). OFEV is a brand and has no generic so it costs more than generic Pirfenidone

Of course, I always warn people to get original Medicare (parts A, B, D) and do NOT buy a Medicare Advantage plan which will restrict the doctors you can see, charge you copays and require preapproval even for cancer treatments! And many places do not take those advantage plans. (Mayo for one).
Original Medicare allows you to self-refer to any doctor in the US that takes Medicare. You buy a Medigap plan to cover the 20% Medicare Part B(tests and visits) does not pay. Compare such plans on the Medicare site.
If a person makes the mistake of going with a Medicare Advantage plan and then wants to change back to original Medicare , they will have great difficulty finding a Medigap plan to cover the 20% Medicare does not cover. In the beginning all insurance companies have to accept you but not after the original enrollment period.