Cryptogenic organising pneumonia

[Aedwards]

Hi, I've just recently been diagnosed with cop and have started steroids after finishing a course of antibiotics. It would be good to hear about others experiences and advise.

[freefaller]

Welcome to the site I do. It have COPD but I am sure someone will be along soon to share their story and advice with you.

All the best.

Sian

Xoxoxo

[O2Trees]

Welcome Aedwards. Sorry to hear you've got COP, it sounds horrid. Many of us here have had pneumonia but i don't think I've ever heard of that variety - there seem to be quite a few. Can you enlighten please? Do hope it clears up as soon as possible. Take care.

[Katinka46]

Your disease was known as Bronchiolitis Obliterna Organising Pneumonia, (BOOP) It is a condition of the small airways. I believe it responds well to steroids. So fingers crossed, touching wood, and all the other things, the prognosis is generally good. I am very interested in knowing how things are for you: what were your symptoms and how was it diagnosed? It looks as if I have a small airway disease, but not COP, hence my interest.

Let us know how things develop

All the best

K xxxx

[Salfordlass in reply to Katinka46]

Hello

I hope you dont mind me replying to you.....I joined this forum last year but have never posted.

COP is an Interstital Lung Disease....the samll ariways are not affected at all. It usually, but not always, repsonds well to steroids. Problem is for many sufferers relapses are very common. I was DX April 2014 and am now fighting my way back from mt second relapse. I am due to see a Consultant who specialises in Iterstitial Lung Diseases very soon. There is talk of them trying me on 'steroid sparing drugs' in order to try to reduce my sterois dose.

I was lucky in that from being ill iniitally I was diagnosed very quickly and started on the appropriate drug regime.

Best wishes

She c

[Katinka46 in reply to Salfordlass]

Sorry if I got things wrong. The only bit I got right was that it responds to steroids.

Apologies to all who were confused by my reply.

K xx

[Salfordlass in reply to Katinka46]

HI I find all the different lung conditions very confusing......I only know about this one as I happen to have it

She xx

[Katinka46 in reply to Salfordlass]

Sounds very unpleasant. And seems to take a long time to deal with. My confusion is the the B of BOOP is bronchiolitis (therefore small airways disease) maybe that is why they changed the name to COP?

I agree about the difficulties of all the different lung diseases. Confusing indeed.

K xx

[Salfordlass in reply to Katinka46]

HI

It can take 6/9 months to get better even if you recover well...if that makes sense? Problem is relapses are very common when the steroid dose is reduced or stopped.

COP used to be call BOOP some experts claim it's the same illness and others say there is a difference......seems to be still referred to as BOOP in America.....I am not too sure if its exactly the same illness though??

When I went on holiday in July my insurance company listed my illness on the policy as BOOP. I checked with my consultant as to whether or not this was ok and she confirmed it was.....ha ha the plot thickens

She x

[Billiejean_2]

Yes, there was an American lady here with BOOP. She stayed around for a while last year so if you put BOOP into the search bar here, you might find her posts.

[Aedwards]

Thank you for your quick replies. A few more details have been asked for so I thought I'd share and perhaps others may have experienced similar. I'm 51 yr old female. It started with a cold/ flu like thing which isn't uncommon for this time of year and in my job.( I work in a primary school with lots of winter germs flying around) but it lingered on and developed into a chest infection. At first I thought it would clear up by itself and took painkillers for the chest pain. I was sleeping propped up in bed as it was too uncomfortable to lay down. I was experiencing pain in my left shoulder cavity and right side ribs and back. After another week of this I went to see g.p. Who prescribed chlorythromicine for chest infection. I carried on taking painkillers and working but I was struggling and getting tired very quickly. The pain in my chest increased to a level that I struggled to breath pain free and ended up from work to A&E. East Surrey hospital staff were amazing and quickly did a chest X-ray ,which showed fluid on both lungs, followed by a ct scan which showed lesion on left lung, and as I later found out, smaller masses on both lower lungs. To cut a long story short I started on I.v. Antibiotics and had a lung biopsy pretty soon after. Dr had thought he was looking at lung cancer but biopsy showed cryptogenic organising pneumonia as the cause. I'm currently on first week 30mg of prednisalone and Dr wants to re X-ray after 6 weeks before reducing this. Feeling very worn out by it all and frustrated at how breathless I become at the slightest exertion. I'm interested to hear from others with the same, sometimes called boop. ( hope this info is useful to someone else)

[Evine in reply to Aedwards]

Late to the party but your path to diagnosis sounds very similar to mine. Ground glass opacities on ct scan after breathlessness and what I believed to be a persistent chest infection which obviously wasn't. After a and e I was in hospital for a bit, lots of steroids later and now an even higher dose as I'm not really improving. They believe it to be caused by an autoimmune disease although unsure which one. Recently had severe joint pain but they aren't convinced it's rheumatoid arthritis. Starting an immunosuppressant on Tuesday which I will have to take for at least two years. Very frustrated and feeling unwell. A lot! How are you feeling now? Are you showing any songs of improvement? Have you returned to work?

[Evine in reply to Evine]

I should add I'm 32 non smoker. Two young children.

[mpeela in reply to Evine]

Hi Evine

From last 2 years I had multiple doctor visits for cold and cough. Was put on Antibiotics and an Inhaler telling it is because of allergies. Gradually developed shortness of breath and severe back pain along with chest pain. 2 rounds of CT scan was performed to see the progress and with a bronchoscopy Dr confirmed it is COP and put me on 25mg prednisone. I am a 38 year old diagnosed with COP in June 2018. Started Prednisone 25mg from 06/14/18 and sulfamethoxazole-trimethoprim 800-160 mg per tablet(3 times a week). I am not sure about my shortness of breath but my back pain is bothering me even after the medication. Does anyone have back pain along with COP? More than shortness of breath I am worried about my back pain because it is affecting my day to day activities.

Thank you

Malathi

[Evine in reply to mpeela]

Where in the back? I had pain when breathing which was why the gp sent me to the hospital as they thought the pain was a pulmonary embolism.

[Humza89 in reply to Evine]

Hello Evine,

I hope you are doing well.

How are you feeling now. How did you recover as my mom was diagnosed COP 7 months ago.

[Salfordlass]

HI

I also have COP! I was dignosed April 2014. I actually joined this forum last year but have never posted. I find the different posts informative, funny and inspiring. It's good though to find someone with the same illness as myself. (such a rare disease)

I was on a high dose of steroids when I was first ill (60my daily) I did well but because the taper was not slow enough (according to the consultant) I relapsed as soon as I was off the steroids. So, I was then back on 40mg and tapered down much more slowly....I felt fantastic really like my 'old' self in July August and September of this year but when I was reached the 10mg dose I relapsed again....a very common theme with our illness.

However I am so happy to say that I seem to be coming out of this relapse much quicker than the last one. My SATS are up again and my Lung Function Tests have improved a lot. Its a frustrating illness and takes some getting used to!

The side effects of the steroids are not nice but hey ho without them I, like many others, would be totally unwell and not able to live life.

I am by no means an expert on this illness but over the last 19 months I have learned quite a bit of info. PLease feel free to mail me at any time if you need to cpmpare notes.

Big hello to everone on this site

My very best wishes

Sheila xx

[Humza89 in reply to Salfordlass]

Hello Salfordlass,

I hope you are doing well.

I just wanted to know the update as my mom was diagnosed COP 7 months ago and she is not doing well.

I wanted to know if you have recovered and what did u do to achieve that. Thank you.

Regards

Humza

[Humza89]

Hello Sheila,

I hope you are doing well.

I just wanted to know the update as my mom was doignosed COP 7 months ago and she is not doing well.

I wanted to know if you have recovered and what did u do to achieve that. Thank you.

Regards

Humza