Hi, I have a newly diagnosed lung condition and was started on a reducing dose steroid regime 3 weeks ago and am yet to feel any better. I have been diagnosed with an organising pneumonia with no underlying cause identified. My symptoms of intermittent chest pain and shortness of breath started March this year. I’ve had 2 x CT scans which showed a progression in the inflammation and a bronchoscopy and blood tests which tested for any signs of infection or autoimmune conditions. My symptoms were never so acute that I could not maintain my usual daily activities but I can feel definite difference in myself as regards walking up hills etc. There is very little information about this condition available. I spoke to a very compassionate clinician from BLF helpline but otherwise have only had dr google to look at which I know cannot always be very helpful! My GP has listened to my chest twice and used a sats probe once. My respiratory consultant has never met me face to face - just 2 X brief telephone consultations before prescribing the steroids.
I need to add that during this assessment time I found 2 new lumps one of which was picked up on the 2nd CT scan as a cancerous deposit on my rib. Looks like my breast cancer has come back. I see my oncologist on Monday about the cancer.
Does anyone have experience in having steroid treatment for organising pneumonia or cryptogenic organising pneumonia? I was hoping that I would be feeling the benefits by now - the information on BLF site says within 1 week!
Thanks for any help
Kate
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Catrat
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good morning catrat, i have empherseyma stage 3 to 4, i have just finished a short course of low dose steriods and within 24 hours i was fealing better,as for booster jab its the same here no one has a clue,breath easy
I hope your appointment on Monday goes well Catrat. Jax🐶x
I was hospitalized with COP in 2018, 1 week on 60mg prednisilone and I started to recover, then dropped to 40mg for some time. Before O2 was at 82 at rest and into 60's when moving. Still being weaned off steroids 3yrs later. You didn't mention what dosage you were on so I've no idea what to say for you.
Thanks for replying. There is so little information about COP. Sounds like your condition was much worse than mine. My sats have always been ok when I’ve checked and like I said I’ve said I’ve been able to carry on all my day to day activities. I’m on 45mg of prednisone (I’m 60kg) and will be reducing down every 4 weeks. How are you now after 3 years? Do you have other medical problems as well?
Hello MickforceJust thought I’d touch base as we COP people are a bit rare. Hope you are doing Ok im still taking prednisolone after 2and half years. Not going to try weaning down from 20 mg until March. I’ve relapsed twice after trying to wean down
Oh woodwalker you have had a really bad time. I do feel for you. Thank you for taking the time to reply to my post.
I saw my oncologist yesterday and he confirmed that my breast cancer from 2 years ago has now come back and is now in some of my neck nodes and a rib. I am to have a full body scan to check if there are any other cancer deposits (including my lungs). Then I will be starting chemo in November. It is what I was expecting. Interestingly he said that he feels that my lung condition may well be linked to the cancer - something that the respiratory team had dismissed when I asked. I don’t think it will make any difference to my treatments. If the underlying cause of my organising pneumonia is cancer then chemo will help my symptoms.
Thank you to all of you who have sent me kind messages.
Hello CatratI’ve just picked up your post. I don’t read healthunlocked too much, as rarely are there posts from people with COP, because as you probably know it is quite rare
I hope your steroids are kicking in now and you are feeling better.
I’ve had COP since April 2019. I was never hospitalised, but was extremely ill. In bed all the time. Very breathless with a cough and high temperature 24 hours a day and unable to eat
This went on for 8 weeks until I had a diagnosis following CT, blood tests and bronchoscopy. I began on 40 mg prednisolone and my temperature went and I started eating after about three days. I had a rapid wean of prednisolone and relapsed. I had another attempt at weaning last year, but relapsed again I’m currently taking 10 mg until March, then we will try again
I have check X-ray every three months , or more often if things aren’t right and telephone appointments. Haven’t seen my consultant face to face since Christmas 2019, but he just needs to see the pictures!
It seems from what I’ve read from others that how it goes and how you are treated varies depending on your consultant I also read about 30% of patients don’t get better. Majority take their prednisolone for 6-12 months and it disappears and that’s it!
I do now have some lung damage and remain breathless.
I train twice a week to get stronger and fitter and hopefully ——- staying home because of Covid doesn’t help
Did they not think your chemo might have been a factor in developing COP? Anyway hope all is going well with you
Hi Woodwalker. Has your doctor checked to see if your adrenal glands are working? Sometimes they can stop working after taking prednisolone for a length of time, I haven’t stopped taking prednisolone yet, but it’s something that will be looked at if I ever get as low as 5 mg.
Hello catrat. Just read your reply to woodwalker, so hope your chemo is going OK. Maybe your oncologist does think the chemo caused the COP, but I think at the end of the day, who knows, and if it’s there it’s there, and as you say won’t make any difference to your treatment
Thank you for replying to my post. I was so desperate to get info about COP. The steroids didn’t help and I am still in the process of weaning off. In the meantime my chest symptoms have got a lot worse. I’ve not needed to be hospitalised but keeping an eye on my o2 levels myself. I’ve been on chemo for a week now. The radiologist thinks now maybe not COP but may be another rare condition lymphangitis carcinomatosa which i think is where the cancer is in the small lymph vessels in the lungs and this in turn causes the inflammation and chest symptoms. All the best with your COP and all the best with you woodwalker. X
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