I have just had results from a lung biopsy and have been diagnosed with cryptogeneric organising pneumonia!! Supposedly very rare I have had Iv antibiotics didn't touch it and currently on my 3rd week of 30mg of steriods without any effect at all , I am due back in clinic 9th Nov. Does anyone know what the next stage is ? It's very frustrating as I quickly went from being very fit and active to struggling to carry out day to day activities! Can't breath , coughing very tired and very emotional right now ! Any help or advise would be appreciated. Thanks in advance.


16 Replies

  • Dear Jane that sounds awful and l do feel for you. I have not heard of your illness but maybe someone will come along who has and can offer advice.

    Best wishes to you. Xxxx

  • Thank you it is i am told very rare but had some lovely comments xx

  • I'm really sorry I can't offer any advice but wanted to say that am thinking of you and hope things will improve for you very soon x

  • Hang in there something will come up.Might check with mayo clinic they r the best.

    Good looking.Let us know what u find out


  • Welcome to the forum Jane. I'm sorry to hear you're feeling so poorly with an infection.

    Personally I can't give you advice but hopefully someone will be on soon who can.

    I can however wish you well & hope you get the help you need when you go back to the clinic in November. 💐

  • Thank you Jessie x

  • Bless you Jane. Sounds very distressing for you. I'd never heard of it, so I googled it and it does say that it can take weeks to months to recover, and that it's treated with steroids. Sorry I can't be of more help, but I send you my best wishes and hope that someone will come forward with some good advice for you soon.

    Take great care.

    Pam. XXX

  • Thank you pam it is very frustrating xx

  • Hi Jane I am sorry I can not help you. I would just like to say I am thinking of you. And that you get all the help you need. Xx

  • Thank you that's very kind of you x

  • I do not know much about it but it is one of the small airways diseases. Not a small disease, I hasten to add. I believe it does respond well to treatment but I think it can take a time. It used to be called Bronchiolitis Obliterans Organising Pneumonia (BOOP) which is even more of a mouthful. I have seen it mentioned when I have been looking up my condition. So, hang in there and pester the doctors.

    All the best

    K x

  • Hi I am 37 and currently in hospital for the third time in 6 9 weeks I have had pneumonia now since August 5 course of antibiotics and 19 days of steriods and still no better, I am asthmattck and copd really been diagnioaed I have have a cough for over 3 months now and I pass out 3/4 times a day even in my sleep from the cough. Why am I not getting getter 😭

  • OMG that sounds awful I really hope they sort you out really soon x

  • Me too doctors have just been round and I passed out in front of them they are starting me on a mess now for copd

  • Hi Jane sorry to hear that and I hope things improve soon! could I ask did they include a COPD test or Xray in your diagnosis and how were the results from that? x

  • Hi Jane. How are you? Much better I hope.

    I hope you don't mind me contacting you, but my consultant believes I have Cryptogenic Organizing Pneumonia but has recommended a VATS lung biopsy to confirm the diagnosis and to rule out Vasculitis. I've been unwell since last July and have already had a bronchoscopy, which indicated inflammation but ruled out infection/ malignancy etc. I wondered did you have the VATS procedure and how was your recovery from it, also has the steroid treatment strated to work? Did they need to up your dose? Sorry lots of questions, but its so hard to find any information on COP! Thanks.

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