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ILD diagnosis nothing helping

Lung Health | Last Active: Nov 18, 2025 | Replies (8)

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Mae,
Thank you for your response.
What type of oxygen do you have?
Oxygen hasn't been suggested, rather than other medications in the future.
I am currently battling with breathing issues - can only go short distances and unable to do the household general cleaning duties that I once did easily.
Perhaps I should seek another opinion.
Liz

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Replies to "Mae, Thank you for your response. What type of oxygen do you have? Oxygen hasn't been..."

@lizaussie You should see a pulmonologist and specifically one that specializes in interstitial lung disease not in sleep medicine.

There are 2 antifibrotics for pulmonary fibrosis but they have lots of side effects. I have ILD/pulmonary fibrosis and in my case my Specialist noted I had become stable and only prescribed oxygen - permanently for exertion and sleep. I have a portable oxygen concentrator and a stable one at home. O2 is important to avoid developing pulmonary hypertension.
It is important to determine what your oxygen levels are doing as below safe zone damages other organs. Purchase a good oximeter. The ring ones like Lookee Tech can track your oxygen when you sleep and give you a nice report after for your doctor
You should have a pulmonary function test, an oxygen titration test, and overnight oximeter test...and a doctor that knows how to interpret the findings ...many do not!
Regarding inhaler, know that there is a difference between obstructive and restrictive lung disease. COPD is an obstructive disease. ILD/pulmonary fibrosis is a restrictive disease. This is obvious in the pulmonary function test if the doctor knows how to read it. Inhaler did nothing for me.

@lizaussie is there a ILD clinic in your area? far to many pulmonologist don't have the resources this specialty clinic will have.