Organising pneumonia

[Hellodolly]

Hello everyone

A first time post looking for shared experiences and support.

I’m a non smoker, relatively fit and healthy, 57, mild intermittent asthma. In July started coughing, chest infection, then got flu, diagnosed with pneumonia in early August. Penicillin did nothing, was then given zinnat and oral steroids, as well as regular inhaled ones. Recent X-rays show that pneumonia has not gone but has improved since 1st X-ray. I am coughing most of the day and bringing up phlegm and people ( understandably!) are giving me a wide berth as I sound dreadful!! The doctor has now mentioned that it might have morphed into organising pneumonia which sounds slightly sinister. Has anyone on here had experience of it?

Best wishes to all of you !

[Katinka46]

Good morning HelloDolly

There are people here with it. It has confusing names, it is in the small airways (but is NOT a small disease) it has been called Bronchiolitis Obliterans Organising Pneumonia (BOOP) then, because that sounded too similar to what I have which is Bronchiolitis Obliterans ( aka Obliterative Bronchiolitis), your disease was renamed Cryptogenic Organising Pneumonia (COP). My understanding is that it responds to treatment with steroids but it can be a very slow process. I hope you feel confident that your doctors are dealing with it well.

Someone will surely pop in soon who has it who can share their story.

All the best

Kate

[Hellodolly in reply to Katinka46]

Thank you so much for replying . At the moment I am a bit of a confused, coughing mess! I don’t think anyone is very clear yet about what I have. The lung specialist is now trialling me on an antacid just in case reflux ( tho I have no symptoms) might be exacerbating the cough. I feel slightly stuck in a no man’s land where my chest refuses to get better, but no one really knows why.

I keep thinking that the hacking productive cough just might be the end product of ordinary pneumonia?

Anyway, most grateful for your response.

[peter06 in reply to Hellodolly]

Try asking for

Co-amoxiclav 500mg/125mg tablet

One To Be Taken Three Times A Day

Prednisolone 5mg tablet

four to be taken daily as a single dose (emergency supply)

[Hellodolly in reply to peter06]

Thanks Peter. The pulmonologist hasn’t decided it’s what I have yet. Co amoxiclav was the first antibiotic I had, and it didn’t touch this pneumonia, so I moved to zinnat, with 30 msg prednisolone, but I am not totally better.

I’m due to see him in 10 days. The X-ray says resolving, but the cough and phlegm are still dreadful.

[ShebaAlfie in reply to Hellodolly]

Hello

I have been diagnosed with COP for the last 2 years but initially they thought I had an autoimmune disease some 8 years earlier and at that time I was given high steroids which cleared it up fully. It came back with the same symptoms you have and I kept thinking it was how I’d be forever! I kept on coughing for months all the time scarring my lung so I’d recommend keep going to the doctor each week until they get it under control! Exercise when you feel you can and good luck 😉

[Hellodolly in reply to ShebaAlfie]

Thank you Sheba -

That’s really interesting. I have more investigations to come in March so there might be more clarity then. It is helpful to know about your experience - I hope you feel better now.