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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
Sorry to hear the situation . I live in a US state where many people have two drive over 5 hours for basic healthcare. I'm in a city of about 1 million which I would much rather live out on a farm like I used to but I can no longer .
Are there any asthma doctors? Or even a primary care can prescribe some things. A drug called Qvar significantly helps my symptoms generic is Beclomethasone . It is an inhaled steroid so not much leaves your lungs. While too many pulmonologist focus on sleep medicine if you can use the internet to try to find one the treats pulmonary fibrosis ( which is the scaring that creates ILD) that might help. There are several causes of ILD, so idk if you have had exposure to silica dust, asbestos , mold, etc? Another prevalent cause is autoimmune diseases. Try to get your primary to run an autoimmune panel becasue getting to a rheumatologist will help get you to a pulmonologist. There should be a national association of pulmonologist for AU that maybe a resource for finding the right doctor. There are several new medications for ILD which is why I think you should do what ever it takes to get to that ILD clinic. Melbourne is pretty big I would try calling the University hospitals and the larger hospital and asking for the pulmany department then asking who ever answers if they treat pulmonary fibrosis or ILD. A lot of hospitals don't just post online these things. I called the 3 big hospitals in Minneapolis after not seeing anything on their web sight and found out 2 have ILD clinics.
@arbust91
Good suggestions.
I will follow up the hospital ILD clinic and try and get an appointment.
The great thing about this site is that you are in touch with people who are going through the same thing - even though in different stages. ILD is not something you hear about, nor do I know of anyone here who has it.
I am sure it started with my having had a severe case of covid as from then on, my energy level was never the same and it started deteriorating. (Whether I came in contact with asbestos, silica or mold, I am unaware.)
Having to drive 5 hours for basic healthcare only happens here if you live in the country where they are short of doctors etc. I am fortunate living in the city, but I will say after covid, many doctors retired so you have to wait longer for an appointment.
Thank you so much for taking the time to respond with your suggestions.
Much appreciated,
Liz