Chronic extrinsic allergic alveolitis

For the last four year I I was treated for asthma and bronchitis then in 2014

My specialist said I should have a ct scan which showed ceaa in both lungs

Prescribed prendisonline alendronic acid and d cal

Originally some improvement but recently got worse and now still in steroids a also

Azathioprine

Last week flared up again and now on double steroids for I week

Would like to meet anyone with similar

13 Replies

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  • Hi, I have asthma / COPD and I take steroids, alendronic acid and Calcium tablets too. My steroids have been increased , the GP reckons it was because of the pollution in the UK and a virus that caused my breathing to get worse.

    Sorry I can't help you any more, looks like you are up early too....steroids often keep me awake. Take care and I hope someone else will have a better answer soon

  • Thanks for contact

  • sorry to hear you are feeling bad again I to have asthma and taking steroids is the only way I can sort it out but the dr only gives them too me about every six weeks, then I am fine for a couple of weeks then the whole thing starts again, you say you have ceaa could you please tell me what it is. many thanks jean

  • Hi, a warm welcome to you. So sorry I don't know about ceaa and ver sorry you've been suffering. Can it be down to the recent bad quality of air as well?

    Azithromycin is a godsend to many on here.

    I cannot take prednisolone so take extra doses of my inhalers when necessary. Asthma.

    All the best and don't forget, we aren't medics but they are on the BLF helpline if you need them. Office hours, 03000 030555. P

    PS. You've proved my point, I'm always raving about demanding a CT scan. I was ready to beg borrow or steal to get one.

  • Thanks for contact

    Ceaa

    Is chronic extrinsic allergic alveolitis

    Somehow I have inhaled spores into my lungs

    No idea where from

    I guess the steroids and Azathioprine hope to contain with little chance of cure

    Nice to hear from you

  • Hi again budleigh4

    Extrinsic Allergic Aleveolitis (now more commonly referred to as Hypersensitivity Pneumonitis (HP)) is an immune system reaction to something, normally harmless, that has been inhaled by someone susceptible to the condition. No one knows what makes a small number of people susceptible and it is true that there is no cure for the condition.

    The key to managing HP is trying to identify what is causing it. There are many exotic names associated with it such as Farmers Lung, Pigeon Breeders Lung, Hot Tub Lung etc. in fact at the last count there were over 200 known causes of the condition. If you are able to identify the trigger (antigen) and avoid it for the rest of your life then it is possible to stabilise and/or see improvement.

    When you breathe in the antigen your immune system treats it as if it were a virus or bacteria and starts to attack the microscopic particles in your lungs. This causes inflammation, with associated breathing problems, coughing etc. If the inflammation is allowed to continue then eventually fibrosis develops.

    It's really important to ensure that you are receiving care from someone who specialises in Interstitial Lung Diseases (ILD's) to ensure that you get the best treatment available and have access to the most up to date, and often specialised drugs. I was told by my local lung specialist that my DLCO would not get better than the 65% it had been from when I first saw him. He wrote to my GP telling them that steroids had no benefit and he had nothing further to offer me. At 46 years old I was not prepared to accept that, and as I had done a lot of research I knew that, under the NHS, I should be referred to a specialist ILD centre. So that's what I requested and I haven't looked back. My DLCO is now 93% with the help of steroids and I am now in the care of a team who can more effectively monitor my condition and offer me more specialised drug treatments if my conditions warrants it.

    The most important thing is to identify the antigen so you need to look at your work history; at home you should be checking for mould, particularly if you have a cellar, exposure to animals, including, but not exclusively, birds and feathers in soft furnishings, also any other hobbies that you might have. That said, in around a third of cases the cause is never identified and the lung damage continues unabated. In these situations it is even more important that you are under the care of a specialist ILD clinic.

    As explained in your previous post there are not that many people with this condition on the forum, probably only around half a dozen of us. If you are keen to meet more people with the condition then there is another site that I am on called Inspire.com which is an american site but has people from all over the world on it and therefore a greater number of people with this condition. If you do go on there a good place to start is by putting Hypersensitivity Pneumonitis in the search bar as this is the more common name for the condition.

    If you want to share more with us about your journey or have any other questions then feel free to post as often as you need to.

    Jackie

  • Hi i feed the pigeons in the garden,could this be contributing to my hypersensitivity pneumonitis,mandy

  • Many thanks for details a concern

    You seem very knowable and I thank you

  • Hi, Unfortunately, I have eaa/hypersensitive pneumonitis. Apparently caused by my parrots, which have been re homed 😓..but as the test for birds proved inconclusive who knows. I am now paranoid about everything around me as I don't know ,for sure,

    The cause.

    I was rushed to a&e with breathing difficulties in February, spent a week in hospital, on oxygen, been on steroids since then. 40mg down to 5mg. Getting results of latest ct scan Thursday, although I'm not that confident about them..

    My problem at the mo is the steroid side effects... Depression, moods and the weight gain.

    it's getting me down big time 😁

  • Thanks for response

    I am now on cyclophosimide hoping to take less steroids

    Like you the steroid after effects are a big problem as are the new drug

    Just had six weeks pulmonary rehab very helpful

    Now waiting to attend balance clinic

    Wish you well

    Keep in touch

    Mike

  • What does pulmonary rehab involve,

    Hope you are doing ok 😀😀

  • I live in Devon and your doctor can suggest you attend pulmonary rehab twice a week for six weeks each visit is two hours first hour is various light exercises run by physics the second hour are talks on diet breathing exercises inhalers how the lungs work. Also we had one on steroid use and osteo Peronist

    All in all very good and helpful

    Most of those attending had cops I was the only on with cease

    Hope this helps you

    Mike

  • That's worth knowing.. Thanks

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