Hypersensitivity pnumonitis

Hi, I was diagnosed with hypersensitivity pnumonitis about 3years ago, after exposure To mould, I Was treated initially with chemo, now steroids, oxygen and have tried immunosuppressant's but have had bad reactions to the later. Is there anyone else with this condition who may have some advice or knowledge about treatments? Many thanks

4 Replies

  • I have chronic extrinsic allergic alveolitis, I have inhaled spores into both lungs which could be mould

    I am on steroids and Cyclothosimide fo the last two years

    Do you think we have something in common

    Regards mike

  • HI Mike, I have copd , and use inhalers,  but have always tried to make the point with no avail, that I was perfectly ok. till I slept in a very damp bedroom , which at the time didnt know about spore, and thats when my brathless etc. started and I have never heard of the name of your diagnosis . just wondered if thats what I have. as I strongly beleive that is what I have really.  my walking has been the most affected.. do you have any symptons that I could relate to?  regards MO X

  • Mine could have been caused by mould as I lived in a Victorian house with some black mould on the walls, but may be other causes

    My walking and balance have been badly effected by the steroids

    And now coming down on steroids by one mom per month

    May be worth looking at my condition on the Internet or check with your specialist

    I have always found the the British lung foundation website very good

    And often speak to them

    Keep me informed


  • Hi, Mike , thanks for your reply,sorry it's taken so long to answer you, I went down with a chest infection from hell.  It does sound as if we have similar conditions. I was initially given chemo but then I was moved on to immunosuppressant's, all of which have given me side effects, that I couldn't live with.  One of the latest suggestions has been retuximab apparently this is usually used for rheumatoid arthritis and we will need funding for it. Have you heard of this?  Hope your well, 

    Regards Lyn

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