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.


15 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

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