Evening, after 16 months of tests and biopsies I have been diagnosed with BOOP, I’ve been told it’s a rare condition and very rare in someone my age, that’s why it took so long to diagnose. The dr had a laugh and said I was a real mystery to him and his team along with radiographers and surgeons. 🤦♂️ Has anyone else had this and not been diagnosed for a long time and managed to recover after steroid treatment?
BOOP / COP: Evening, after 16 months of... - British Lung Foun...
Hello LovelyJubbly- , 👋
Welcome! 😊 I have Bronchiolitis Obliterans or Obliterative Bronchiolitis which is often confused with BOOP (Bronchiolitis obliterans with organizing pneumonia) . They changed BOOP to Cryptogenic organizing pneumonia so now it's less confusing . But BOOP and Bronchiolitis Obliterans are different conditions. Initially, they thought I have BOOP. But further investigation showed otherwise. The good news for you is that COP is treatable with oral steroids, commonly prednisone.
I believe the prognosis of idiopathic BOOP is very good, some patients even resolve without treatment. And many treated with steroids are cured. Bronchiolitis Obliterans on the other hand, is progressive and does not respond to treatment. It took six months for them to diagnose my condition. So, although it sounds odd, I am pleased you have COP and not BO.
Do keep us updated if you'd like.
Cas xx 🙋🐕
Thanks for the welcome and the reply,
Thanks for the information, I was reading about BOOP/COP and saw it’s referred to as COP so was amazed dr kept saying BOOP. I was told that there is a good chance of it clearing up. As when they did my biopsy they actually took a large wedge out of diseased lung. I was just concerned as I was told I’ve probably had it for a couple of years now, is treatment going to work? Or take longer to work etc. Another thing in my favour is my age, only being 31 And in reasonable good health hopefully I should fight it.
Also due to my age they are all really keen to find the cause of it and how I respond to treatments.
I start my treatment shortly and have further Lung function tests and a CT scan in 6 weeks so will keep you updated.
Welcome to the dodgy lung club.one of our residents Katinka46 call you mystery lot Zebra's which is now our official description of people with exotic lung conditions and you have just met one of her club our wonderful Caspiana our living and thriving lung transplant superheroine.i am just a bog standard very severe emphysema candidate with a daft cat so can only stand by in amazement at you more exotic folk.i had never heard of your condition but find that our ever diligent sponsors Blf have a little article about it.
Anyway to cut a long ramble short you seem to have a good understanding and control over your condition and long may it continue until it is eradicated.
Best wishes Ski's and Scruff's
And welcome to the Zebra club, which no one would choose to join. Caspiana has done a brilliant job of explaining the difference between OB, BOOP, COP. I have OB, Obliterative Bronchiolitis which she has (also known as Bronchiolitis Obliterans, and Constrictive Bronchiolitis).
And, yes, my understanding of COP is that it responds to steroids. Your age, fitness will all help. Good luck and let us know it goes.
Zebras for ever!!! 🦓🦓🦓 Only in your case NOT for ever.
Welcome Hun, I can't say I ever Understood this Type of Lung Condition, Only by our Kate (Katinka) when she helps with her Valued Replies. For the First Time I can understand from the comment from our Dear Caspiana . You are a rare Lungy it seems. I look forward to your updates and a Time for when you say it has Cleared up with Steroids. Good Luck LJ. Oops, I mean "Zebra" No.2. XXX C.
I'm sorry to hear that you've been through so much before a diagnosis.
I was diagnosed with COP previously called BOOP last October.
I did post on here at the time and nobody who responded had had it although Caspiana was kind enough to respond at the time to me too.
I had been initially diagnosed with pneumonia last June but it didn't appear to be clearing up. Mine was picked up after I had a third chest X-ray which showed the shadow had moved around the lung. I had to wait several weeks to see a consultant who confirmed this diagnosis.
However, the good news is that after a 3 month course of prednisolone it has cleared up!
The consultant remarked that it had been diagnosed quite quickly for such a rare disease (5 months) ... The downside was that I'd been prescribed 5 lots of antibiotics by then .. he did question why the doctors had kept prescribing them when they patently didn't work!!
It appears that the cause of it is unknown hence Cryptogenic ... The name of COP is odd as it is a disease not a pneumonia infection!
I have now been discharged but with an SOS to contact the consultant's secretary if I begin to feel unwell with the symptoms again as it can return ... The consultant has about 5 patients who've been diagnosed with it ... some of whom have had it return once or twice. .... so, I'm keeping check.
I hope that you respond well to the steroids .. I felt like superwoman on them after feeling so tired and unwell for so long .... Good luck!
Welcome to the CoughingClub Lovely,
I have had Organizing Pneumonia for 2 years. Originally labelled COP by my first lung specialist who said if he could cure it he would get the Nobel Prize for Medicine! What a caring soul. He dosed me up on 50mg Prednisolone for 3 months which nearly killed me. On to the next specialist who wrote a letter to me GP to say I had IPF as well as COP. Once again more drugs to reduce the excessive use of Preddy causing me a stack of hideous side effects. He got tired of treating me and starting losing his interest and temper. The third specialist said he couldn't cure me and that it was obvious that the IPF had caused the COP. Now I'm on my 4th specialist in a major holisitc public hospital and the lung specialist says the story goes like this - I already had IPF, and contracted a bacteria which attacked my lungs and therefore it is Organizing Pneumonia not Cryptogenic as we know where the pneumonia came from. On top of this I had breast cancer and after the tumour was removed I had radiotherapy which blasted through my lung. Not good.
So now I am in holding pattern with the OP on 10 mg Preddy. Once I go lower, the OP rears its ugly head. Everything is now manageable although I have put on a ton of weight.
I am vigilant about weather patterns which can cause another relapse of the dreaded shingles.
I live in Australia and the bush fires and smoke have caused so many people to become sick and so much wildlife has been scorched to death, My lungs have not coped well.
Now another connection I have discovered through my copious medical reading on excellent websites including Mayo Clinic and British Lung Foundation is that COP/OP has a connecting Autoimmune Disease such as RA or IBD (I have both). If you find you don't have this link, then COP/OP is not a correct diagnosis. It is like a Who dunnit. It leads me to think that there is still much to be discovered about this and so many other diseases. As you can see some of my previous specialist were in the dark about the whole problem. I was born and raised in inner London and got swept up in the Big Smog of 1952. I have always been "bronchial". Not a good start.
The end result is that I keep asking questions, finding leads to answering questions and am still doing so. Another observation is that if your endocrine is stuffed many things will happen to you. I have fun with the whole situation these days and my husband, a true hero, and I play games like "Name that Disease" where specialists sit on a panel and the patient asks "what disease do I have?" If there is no answer or they ask you "What's your name again?" They are dunked into a pot of GOOP before them. The one that says "I don't know but let's find out, I'll ask my colleagues" wins the prize. A happy patient.
Keep asking questions and stay in touch. I am 67 and I'm still standing after all this time....