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ILD diagnosis nothing helping
I had covid in 2023 and from that time on, had energy deteriorate. Saw specialist April 2025 and have had x-rays, CT scans etc. Was put on prednisolone but started having vision problems so stopped.
Have always been an active person and have had no major health issues over the years. I have been so lucky. I am 83 years old and having problems breathing. Doctor has suggested I go on half prednisolone and he will see me in another 3 months after I have had x-rays, spirometry.
Heard that Breo inhaler may be helpful but can cause side effects.
Is there something that will help me breathe better .
I live in Melbourne Australia,
Liz Aussie
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Prednisone use to help me but nothing helps except oxygen
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
@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.
Hi Vic83. Thank you so much for your response which sets me on a path to follow. Have been unsure of what to do next as coping with medication side effects as well as breathing problems has not seemed to be the answer for me.
I will track down an ILD pulmonologist -can you recommend any? I live in Melbourne.
Will look at oxygen equipment as well.
Your post has shown me that there may be something that will help.
Thank you again,
Much appreciated.
Liz
@lizaussie is there a ILD clinic in your area? far to many pulmonologist don't have the resources this specialty clinic will have.
@arbust91
Thank you for your suggestion.
I live in Melbourne, Australia and I have just checked on the internet and there is only one ILD clinic and it is connected to a public hospital which does trials.
I will look into it further.
Have not been able to find a pulmonologist - they seem to be connected to sleep and respiratory only.
Have not got anywhere with my specialist who only recommends prednisolone which I stopped taking as I had vision problems. His suggestion is that I cut the tablet in half and see if that helps.
Thank you for your comments which are much appreciated,
Liz