Interstitial pulmonary fibrosis

So sorry to hear you had to quit your job, but at least you are getting disability. I will investigate theSaracatinib. I’m not recommending the Ofev, we are all different, but depending on your income, income of others living with you, and you resources besides your home, Ofev could be free from the manufacturer. There are other foundations that can provide copay assistance. They commit for a year for funding once you get approved. They don’t always have money, so you have to keep trying. Weekly. If you want more info, pm me.
Also, if you have done your research on this other drug, and are willing to try it, I would touch base with your doc sooner rather than later.
I wish you all the best, and please let me know how it works out

I sent a message to my doc today. I probably won't hear back until next week but I'll see what she says. I did look up the cost of it and it looked like maybe a couple hundred dollars a month or so. So that would be a plus for sure. I'll let you know what she says and please let me know if you find any info on that drug. Thanks so much! Carol

Will do!

My husband was given prednisone for a while, even though his lungs were ok. Doc wanted to reduce swelling from some inflammation that caused constant small coughing. Which is why I made my husband go to doc in the first place. Found the IPF, but stopped the coughing…
Good luck!

My husband, a former welder for 40 years was diagnosed with pulmonary fibrosis.
He was on prednisone for a month, but could not tolerate it.
He just started Cellcept yesterday.
We are hoping for a good response from this drug.
Thank you for sharing

So sorry to hear about your husband, and of course you, going through this.
Other people who have shared on this site have talked about cellcept; our pulmonologist only recommended Ofev (and another Med specifically for pf, can’t remember the name)
I hope this works for him!!! My husband worked in an office, so I guess this disease is not picky about profession…
If your doc ultimately recommends Ofev, they have a program that if you qualify financially, the Med is free. Also, there are sites that can provide some grant money, again you have to qualify.
However, it appears as though there have been some changes in the Medicare system that will be helpful with the cost next year. I don’t know if the changes are based on insurance plan you have.
I will say that Medicare has been amazingly helpful with information about meds, you can call anytime, just the phone number on the back of your/his card or on your statement.
I am praying that the cellcept is helpful and this is all way too much information…

I have been on Cellcept since early 2021 and have tolerated it well. I was diagnosed with ILD in 2020. My symptoms were never bad and I would say I am asymptomatic now. I am taking 500 mg/day. My PFTs are normal so I am hoping it will be discontinued next year and that my condition is stable when weaned from the drug. I am 79 and female. I have an outstanding pulmonologist.

So happy to hear that you are still doing so well!!!
Recently Asked gp that originally diagnosed ipf how bad his lungs were, not in that manner, and he danced around it…I suggested that it might not be his place to answer, and he grabbed that in a nice way. Didn’t push it. Didn’t want to freak out my husband.
Our pulmonary doc said she needed a year to see how he does on the Ofev…March-April? Tests then.
Great to hear from you, please keep in touch!!!

Consider Esbriet or its generic form; Genentech has a program that might help you afford the medication—we're working through that, as well. If you have Part D health insurance, you might be able to get as far as the doughnut hole and then move from there . . . We earn too much for complete compensation, but not enough to afford it, so we're looking at all kinds of options. See if there is a research institution that might be able to help. We are close to two teaching hospitals and have benefited tremendously. You can always get a second opinion from another pulmonologist practice, too, and see what whoever has to say. Don't leave this up to the "normal" pulmonology group who might not have connections with those research institutions.

Thank you so much for sharing these ideas…last year was really tough and we had to pay the whole amount for first month (put us past the donut hole) and then almost $700 a month for the rest of the year. Like you, I checked every financial aid place, but we were over the limit. It really put a hole in our pocket, but worth it.
This year we just (just???) had to pay to get past the donut hole, what is that, like $3300? no charge for the rest of the year. He takes Ofev and seems to be doing well.
Next year, I believe it is $2000 first month and then nothing for the remainder of the year.
🙏
I hope that you are doing well on your medication and that you continue to do well!
Please share if you have anything else …