Cryptogenic organizing pneumonia

I have not been on the forum in a while because I have been doing well heart-wise. But I did begin to have lung problems starting in March 2025. I was misdiagnosed twice, which is not uncommon if indeed my current treatment proves I most likely have had cryptogenic organizing pneumonia. By the way it is not pneumonia, so I am not sure why they have that word in the diagnosis. It is of unknown origin, is pretty rare & may be cured with 6 months of prednisone treatment.

I think if I remember correctly the bronchioles and either alveoli or alveolar spaces fill up with fibrous tissue like connective tissue, making things stiff & of course giving breathing difficulties. I learned about a good breathing app fr Geo.N. here but have not been doing my usual 5 minutes before bed bec it is harder to do now. When I inhale deeply it triggers a dry cough reflex, the same if I bend over or lie flat. I am wondering if anyone else has had this and has any experience they want to share.

I did see that certain medications can cause secondary organizing pneumonia and that it is harder to treat than the crypto kind. Well it turns out SOTALOL was on the list of meds that can cause it & in 2019-2020 when things - afib/flutter started for me -, they had me on a lot of this anti-arrhythmic. The first thing I told my cardiologist was that since he put me on it, I could not inhale deeper than about mid-sternum without getting a dry coughing spasm. Of course, as usual, he did not have much to say about my experience. I reiterated this many times over the years to deaf ears.

I am now thinking the sotalol started my lung problem, but why now, almost 5 years since being off of it, am I having more of a real problem. I am pretty healthy usually, only barely had Covid (fr home testing) for a day or so once, so that is good bec the more problems you have, the higher the chances of complications from any other diagnosis.

I made an appt almost 3 mo ago to see the same pulmonologist I saw in 2019, when I first started having this problem & was told x-ray only showed mild paraseptal emphysema then, no meds needed as I also passed the PFTs. He is harder to get in to see now as he is head of the hospital lung center and critical care, etc. In the meantime I have seen another pulmonary group. After a bad CXR & CT scan showing right middle lobe infiltrate vs consolidation, I had a bronchoscopy in hospital with several tests. I was cleared of any malignancy, infections, fungus, etc. (my mother died of lung CA in her mid 60s).

I have had a lot of struggles with the prednisone - was started on 40 mg ~4 1/2 wks, then was to go to 20 mg x4 wk but could not continue to tolerate these high doses, so was started 2 wk early on 10 mg which I am to be on til 6 mo of treatment completed fr start to finish. The higher prednisone made me way too hyper, shaky, insomniac, heart racy.... I am also without thyroid for 20 yr, so between that and my cardiac problems, I went to see my endo as well to coordinate care & temporary lowering of my thyroid meds. I still had the insomnia and all the other problems. Now, I have been on 10 mg prednisone x3 wks, & I feel like the walking dead. Only good thing is since I am tired all the time, I do sleep better. I am used to having a good deal of energy & did exercise a good amount prior to the 10 mg. It seems like a drastic taper to me - when will my adrenals adjust? Oh, on top of that, my dry cough has come back. They did not tell me if the repeat CXR had changed, as the 1st I had after the 40 mg of prednisone showed a 50% decrease in some areas.

I did not mention at the top of this, but concurrently the pulm dr put me on Spiriva for bronchitis. It is an anticholinergic and has a lot of the same side effects as the prednisone, but does not treat the cryptogenic organizing pneumonia. A couple of weeks ago he said I could stop it. I think that is the right thing to do now as all this medicine with similar awful side effects has made it all very difficult to get through. He did not say if he wanted me to restart it after getting through this.

I just wonder if anyone else has been through this or has any thoughts about it.

Thanks.

You should consider getting a sleep lab test to include nocturnal hypoxia and take the test where they make you walk up and down the hallway and then measure your o2.

My o2 dropped to 70 when I came down with Covid. I had the same symptoms as you with my long covid.

I was taking Sotalol in 2022 with no problems. Perhaps it is the combination of taking Sotalol with another drug that caused Sotalol to become an inhibitor and remained longer before your enzymes could process it?