Hi I’ve just discovered this web site and thought I’d join if only to learn and share and maybe help others with my condition Cryptogenic Organising Pneumonia.
I was diagnosed over 3 years ago have endured bronchoscomy x 2 and am currently on predisolone 20 mg daily, nebulised sabutomol and gentamicin 40 mg x 2 daily. On top of this I have just started, 2 weeks ago a course of immunosuppressants Azathioprine 50 mg a day! Phew! If you are still reading I also have immunotherapy ie immuglobulins 4 weekly low dose as I have CLL diagnosed April this year and have repeated infections requiring hospitalisation.
I was a fit and healthy woman still working when this all started. I have a brilliant consultant but do feel I’m an experiment at times as I appear to be getting worse not better.
Anyone out there who has the condition, any similarities we can share and if wanted I’m happy to share my medical experiences in the hope it helps someone.
I’m so hoping there is a success story as this condition affects all aspects of daily living but I do keep positive and believe that helps.
Look forward to any comments.
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Newpost
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Hello and welcome to this forum. You are having a tough time. There are members here who have or had COP. I understood that it was usually treatable but that it takes a while. COP used to be known as BOOP, (bronchiolitis obliterans organising pneumonia). It was changed to COP so as not to confuse it with the condition that I have: obliterative bronchiolitis. Which is different and untreatable.
Welcome to the Zebra club, (Zebras being rare diseases), the club that no one wants to belong to.
Thank-you Kate I am learning to love Zebras! Also Thankyou too for your comments although I am sorry for what you are going through.
Mine is now classed as fibrosis of lungs on top of COP or because of it I remain hopeful and it’s goid to hear from others and share our experiences.
😄
Hello,
I was diagnosed after being hospitalized Feb 2018 after having a cold. Had lots of chest infections leading up to that though. I am diabetic with asthma, rhinitis and hayfever to boot.
My o2 sats on admission were 82% resting and somewhere in the 60's on exertion. I was put on o2 2l/min and iv ab's and treated for pneumonia. After 2 weeks with no response and increased o2 to 8l/min, they decided to treat as if it was C O P and started prednisolone 60mg for a week then 40mg. within two weeks my sats had risen to normal?(96-99% on resting).
Soon afterwards I was discharged and told to reduce by 5mg a month to 20mg. Saw consultant in June and was shown before and after chest x-rays. Before both lungs were full of what looked like cotton wool, after was completely clear. Further reduced over many months to the 7mg I've been on for 9 months.
I have just seen consultant again and given permission to reduce to 4mg over the next few months with a view to stopping steroids completely. Once at 4mg have a blood test to make sure my natural cortisol production has kicked back in. I've been warned about it all starting again when trying to come off the steroids.
I hope that is an example of a success story for you. Now if could only shift the extra weight gained! hehe.
Good luck to you in your journey, you have my best wishes.
Thank you so much for sharing your experience mickforce. So pleased you are improved . I did have a short window of improvement about 18 months into condition then it all went wrong and here I remain on so many different drugs. 20 mg steroids , genamyacin x 2 daily, Azathioprine immunosuppressant 50 mg daily plus another antibiotic x 3 times weekly and 4 weekly sessions of immuglobbins!, I had kidney cancer 4 years ago and the kidney was removed and all is well but it means they are mindful of my renal function as a lot of theses drugs affect kidney function. I also have recent diagnosis of CLL which appears to affect my immune system.
However I am hopeful after reading your post that I too will get there.
Hi Newpost and welcome to the site. Sounds like you have had a hard time with these problems. Hope you can get to the stage where things settle down and you start to feel good. Irene x
I have COP too. I have not had it long compared to some people. Only seven months. I was expecting the first lot of steroids to cure me, which I now think was over optimistic and naive. There must be people out there who have got better, but I guess they don’t join the groups as there is no need
I am currently reducing again and am taking 10mg of prednisolone for the next month, so fingers crossed I don’t relapse again.
I also belong to another group, which is just for people with a COP diagnosis, or BOOP as they seem to prefer in America. I’ll try and find the link if you are interested. You have to join via yahoo, which I did find was a bit of a pain
It is difficult to be in touch with others. I was told they see 15 -20 cases a year at my Chest Clinic
Hello Catlover Thankyou for your reply it’s really good for me to share experiences with another COP sufferer your journey does in some parts reflect mine but keep positive we will get there I’m sure. I’m really interested in the website you mentioned and if you go t mind letting me have the link that would be great . I’ll keep in touch and share some of the treatments my consultant is trying.
This group is for all sufferers of COP (Cryptogenic Organising Pneumonitis) or BOOP (Bronchioloitis Obliterans with Organising Pneumonia) to share their experiences and provide support to each other. Only genuine sufferers and their family and friends can join. No spammers allowed. To keep them out, we now approve all new members when you apply to join.
Group Information
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Founded :Dec 16, 2008
Language :English
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This is the info I copied from their site. I found it a bit depressing at first as everyone seemed very negative but as time has gone on I’ve found it better, when I’ve posted and got helpful answers. There are only 370 members who seemed to be scattered around the world.
I’m hoping that after my month on 10mg prednisolone I’ll mg. Treatment seems to be a bit of a lottery as everyone responds differently.
I guess that’s the same for some of the lung diseases too, and they seem to have much worse problems
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