Interstitial pulmonary fibrosis

Are you also taking steroids? What info did your doctor give you about taking cellcept instead of one of the two approved meds IPF? Can you recommend some sites to check out? It would really be wonderful to have more information…
I know that IPF is a type of ILD; I wonder if that is why the difference in Med diagnosis.
I am so happy for you that things are going so well!!!
My husband exercises every day, walking, golf, etc. He is not taking any steroids. I’m the one that has backed out of most stuff because of body/spine etc issues. I cross my fingers that we can do enough stuff to get back on track!
Wonderful blessings for you!!!
How often do you have pulmonary function tests, and ct scans to check? 😘

I took steroids for a few months shortly after I was diagnosed in 2020. Then Cellcept which I am slowly being weaned from. My pulmonologist specializes in ILD so I am confident he knows what he is doing. I have now been on Cellcept for over two years with no noticeable side effects. I feel fabulous and feel lucky. I have PFTs every three months and all are normal. I will have another lung scan next month. Have not had one for more than two years. Fingers crossed.

You have more than my fingers crossed…😂
If you think of it next visit, could you ask him if he thought it would work for ipf, early diagnosis according to doc.
My husband keeps looking for something besides Ofev…he’s doing well on it, but thinks he can find something else…he’s found a couple experiments that work on mice cells in a Petri dish, but no trials, etc.
Would you share what state you are in? And how did you find the specialist for ild? His GP recommended one about 40 minutes away, but he won’t treat his ipf, because he doesn’t have certain issues…

I could not sign in under Totty for some reason today.
I have finally made the decision to purchase a home generator to cover us during emergency power outages after several months of investigating options. Now I am concerned about others in similar fearful situations who can not afford a generator. More investigative work needed on this.

I am so happy that you made the decision to get a generator!!! Now you can sleep at night…when will it be installed?
You are right, there are thousands of people who are unable to afford one. Or living in an apartment and can’t have one…so sad…I wonder if it could be covered under Medicare? Silly me, they are good, but not that good…
Something I just thought of…have seen small portable solar panels. I wonder if they would be powerful enough just to charge…
Of course, need some sun…
Congratulations again on your decision-well thought out, and helpful. If my husband gets to that point, I know we will have to add one to our house.
😘

I recently in last week saw that a generic is about to be approved for this and hopefully this will be soon enough to positively effect you and your spouse. Wish I had saved the article.Saracatinb. Look it up and discuss with pulmonologist.

Thank you for keeping in touch about the meds…I think it’s the generic for the Esprit (? Spelling) which he does not take. Pretty similar side effects to the Ofev, but one more, can’t really go in the sun. I guess you get burned…you don’t have that side effect with Ofev. He golfs and spends a lot of time out doors and we live in the south.
Please keep thinking of us if you hear anything about Ofev that I’m missing…

Just had a minute to read over our great discussions…
Just a follow up, my husband is still doing well on the Ofev with no side effects, except our thinner wallet.
He had his third liver test about a month ago, and since we didn’t hear from the doctor, praying it was a good result and will discuss future testing when we see her in about another month.
My asthma breathing test was the best ever, and I credit a pelvic pt for teaching me how to breathe properly.
I think of all your stories and the decisions you have made. I would love to hear back how everyone is doing or if you have any new information?
Best to all,
ch47
Ps heard that my Breo, which just put me in the donut hole, has come out with a generic! My insurance company wasn’t having it, but when I need refills will ask my doctor to write for that…

Glad to hear things are going well for you both! As for me I'm still holding off on the Ofev. Recently someone wrote in about Saracatinib and how it sounds like it is working well for IPF. I may write to my pulmonologist and see what she thinks about it. I see her again in January but I'm not sure if I should wait that long before starting something. I had to quit my job but I'm getting some disability benefits for now. It's been a rather stressful year so it's hard to make decisions sometimes.

thanks everyone but did not find what i needed. was looking for why dr. perscribed prednisone for my congestion whichwas added bto already order cough pearls then said my lungs sound great great oxygen level bu wanted to treat mucus in the lung Dont make sense to me