What is the reason for possibly changing his medication? I have been on Esbriet for over a year now and am curious, what I have read about nintedanib side effects seems to be extreme compared to perfidenone.

I have seen the same reports and have not seen anything that show any measurable improvement based on user comments.

I am curious about what over the counter drugs if any are used by people. I have chronic sinus infection which blocks my nose so I can not breathe. I use nose spray and prednisone 20 mg and nose strips and vicks and occasionally antibiotics. I would be fine if I could just breathe through my nose. Is this part of the IPF process or something else. What RX drugs are used by people. My doctor did not recommend my trying the IPF drugs as I am old and have a real touchy stomach. Thanks for whatever info is out there.

Good question, @loisblo.
I don't have IPF, but I used to suffer from regular chronic sinus infections. Like clockwork I'd get a terrible infection every spring and late fall. It usually got so bad that it had to be treated with antibiotics, which I don't like taking. Now when I feel the infection starting, I'm usually able to nip it in the bud with nasal rinsing or cleansing with a neti pot. Sometimes I also use Flonase (fluticasone) a prescribed nasal spray if the neti pot isn't enough.

Here's a Mayo Clinic video on the nasal cleansing.
https://www.youtube.com/watch?v=UixdsD1lJNY
@rayhastings @kturchin @steve1948 @nancyligon @oliver22 @kelloggk @agullotti @dfay @llwortman @nomi do any of you experience sinus congestion?

.. good resource .. thank you Colleen! Did not know it existed .. you are such a font of wisdom! Katherine

This is good information. My doctor emphasizes using sterile water to prevent any other challenges or unwanted infections. linda

May I ask how your husband got this medication? According to my pharmacy, it will cost me nearly $3000 a month. I want to get on a study or a grant but even though I have sent my information to them online and filling out paperwork at a seminar, I have not yet heard from the pharma.

I saw my pulmonologist yesterday and I have to see an ENT doctor to try to get me breathing through my nose. Also saw an immunologist as my immunity number IgG is so low. It could all be tied together. Does IPF lead to all these other problems?

Hi Lois: I have been reading your post. I have had breathing challenges as a lung cancer survivor of 9 years 5 mo. I had surgery at Mayo and they also found PF.
i had to learn to breath properly after lung surgery that removed most of my left lung.
I know how scary it maybe to find that next breath.
Dr Amit Sood's, Paced Breathing Study has changed my life. I practiced this breathing pattern and it has helped me to live a great quality of life.
Take a moment to sit in a comfortable chair. Close your eyes. Tell your body to relax from your toes up to your head. Slowly try to breath in through your nose and out through mouth. Or reverse this pattern if it is too difficult by breathing in through your mouth and out through your nose. Take it very slow. Keep a slow ruther of breathing going for 10 mins.
I have found this relaxation can help me even when I feel stressed or hurried. I do have moments when I must remind my brain to slow down 'the dreaded fear' of shortness of breath.
I stop and think through how I breath. I also had to tell my feet to move. I barely crept across a room. But with breathing practice, practice, practice three years later I worked my way back to ridding a bicycle. I walk fast now and chase my grandson!
I discovered moving and not sitting helps me breath. I have to move to live. But life is wonderful even with most of my left lung missing. My husband tells people, She's in better shape now!
Let's stay connected. I am here to listen and happy that you are sharing your story on Connect, where there are so many great insights. I'm sending you silent blessings.
All my best, linda w - mentor volunteer

Just call: 844-372-7438 and tell your info to see if you qualify. Also can visit:Genentech-Access.com/Esbriet
Tell them that is an impossible amount & they will help you find a source like a Foundation or lookalike for financial help! Your dr.Should have given you booklet or brochure for review from Genentech