Nonspecific interstitial pneumonitis

Hello, it's me again. Yesterday I was given details of my lung condition. It's called Nonspecific interstitial pneumonitis. The consultant put a form of Pulmonary Fibrosis after it. I started on steroids yesterday.

I've searched for information and come across lots of very frightening stories and I'm confused (nothing new) When I search 'pneumonia' keeps coming up and not pneumonitis.

I went to the see the GP 18 months ago about a cough! Eventually, 6 months later I saw a respiratory consultant who told me I had late onset asthma! The next consultant, after seeing CT scan, blood tests and lung function tests said 'lungs clear' see you in 6 months.

I was still coughing so saw a private consultant three weeks ago. More tests! My GP's surgery didn't send on my blood test results so another ten days delay in being diagnosed!

My only symptom is my cough plus I've been told my gas exchange is slightly low. Blood gas 99%. I'm very active and I don't get breathless so I'm very, very thankful for that.

I can't get my head round the fact that it's taken 18 months to make the diagnosis!

Does anyone else have this?

17 Replies

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  • Hello GeorginaS

    You might find more info if you search Interstitial Lung Disease?

    I don't have your particular condition, mine is Obliterative Bronchiolitis , which is a small airways disease and quite rare, and Bronchiectasis, and there is not a great deal of info out there about the OB, I have learned tho, that being creative with my search terms yields better results!

    I'm sorry to say that I'm not surprised about the interpretation of your x rays and scans, left to my original radiograpgher, who was adamant that there was nothing and refused to do an HDCT, I would have been treated for pneumonia and sent on my way to an early death. Thanks to a very proactive Rheumatologist who happened to be the medic on call when I was admitted, and felt sure there was something else going on, the further scan was ordered by a higher authority, and reviewed by an expert. The care that I have received since has been brilliant, I do hope that your own care improves.

    Let us know how you get on?

    Cc xx

  • Thank you for getting back to me.

    Goodness you've had a tough time and thankfully the right person was in the right place when you needed help the most.

    I don't know how these things start off. What causes such rare conditions. Do you know about yours?

    I'm looking accusingly at everything including my tempur pillow! I know it sounds mad but as a tea total, none smoking, vegetarian who plays sports and goes to the gym I'm baffled! I'm not a good advert for being healthy at all.

    The scan report had written on it by the radiographer 'early ILD' but the consultant dismissed it and said I didn't take a deep enough breath!

    Keep in touch and I hope you continued to make good progress x

  • Hi, Georgina. It took my surgery a year to diagnose moderate COPD, so it doesn't surprise me that it took a yea and a half for you to get a diagnosis of a less common lung condition. I'm sure more people will be along soon to share their stories.

  • Thank you for your reply. There seems to be an epidemic of waiting and getting things wrong! The radiographer wrote to the consultant saying early ILD and he ignored it.

    What made me go private was when a hospital administrator called to book me in for my bronchiectasis! I had a letter saying I didn't have it! I got another letter that 'mentioned' lung disease and I was told in writing my lungs were clear!

    You couldn't make it up could you 😜

    Hope you stay well and make good progress. x

  • Hi there Georgina. I have this lung disease (NSIP) , diagnosed nearly 2 years now. As you say what you read is very frightening. Initially I was so poorly all the time with chest infections, cough and shortness of breath, but glad to say that things are now under control. I have an excellent Consultant, who I see regularly, every 3 -4 months. Today I finish my PR and this has helped me so much, I'm amazed at how improved I feel. I am told this lung disease is not common ! I do know that it will never go away and I'm still learning to accept this and adapt my everyday living accordingly. The key is to know your limitations and not to overdo things, but pace yourself. My treatment is carbocistine and back antibiotics. Unfortunately I now have been diagnosed AF ( atrial fibrillation) so have to take lifetime beta blockers and anti- coal meds . Stay positive. X

  • Thank you for getting back to me. I'm pleased to here you're now under control. I had three chest infections last year, a month apart. Even that didn't get much action from the GP. I just did not think they know enough but as the advert says, if you've coughed for three weeks it could be serious. Mine was thought to be a habit by the second child consultant!

    Do you know how or why you got this? What triggered it? Is yours pneumonitis too not pneumonia?

    Hope you continue to stay well for a long time x

  • Pneumonitis. I believe my stems back to when I had sarcoidosis over 20 years ago, which I never received treatment. I do know that sarcoidosis causes scarring of the lungs, and apparently my scarring is not new ! My consultant says I have to keep well, treat chest infections immediately and listen to my body. Hope you keep well and take care.

    Wendy

  • Hello Joneswm, I'm a Wendy too!

  • Goodness. Did they confirm that? I have no idea how long I've had the fibrosis in my lungs at the bottom edges. Hope you keep well too and thanks for replying x

  • Yes I too have this illness. I was d/x April 2014 I have been on steroids ever since. I am presently on 10mg of Pred. Like you I had a very bad dry cough then I started with breathlessness and became quite poorly. My DCLO was at that time 31% I am not thankfully at about 63%. I have recently been diagnosed with an Auto-Immune illness.....the doctors (who are an amazing team!) believe this had caused my ILD. Please feel free to contact me if you have any questions.

    Kind regards

    Sheila

  • Aw... thank you Sheila. I'm from Liverpool originally.

    I've been tested for a variety of Autoimmune diseases recently and so far nothing. Interesting to know that your lovely team believe this started it. They can't account by for mine at all!

    After lots of letters telling me my lungs are clear etc I got the diagnosis after going private for one consultation.

    Today I got another letter with my pulmonary function tests. They had written I was lower in one category and the next sentence said it was higher!

    Are you still coughing?

    I hope you continue to make good progress. Do you know what autoimmune disease it is?

    Thank you so much for asking me to keep in touch x

  • Hello

    You are very welcome.

    Yes I have Sjorgens Syndrome. Quite rare it usually only causes dry eyes and dry mouth but can affect your organs and in my case it has. When I was first diagnosed in 2014 I had a Positive ANA Autoantibody (think that's right lol) This can indicate you have an AI illness but, doesn't always mean that. I was tested several times and tested negative but I recently had a lip biopsy which has shown without doubt I have it.

    My cough has 99% gone. The long term plan for me is to try another steroid sparing drug. They tried me on Azathrioprine last year but I ended up in hospital as it impacted badly on my liver. There are lots more to try though, so I am hopeful they will find one to suit me.

    Being told I had the AI illness made a few things fall into place. You see even though my lung condition is stable I still have days where I am so tired !!! This is apparently a symptom of the Sjorgens Disease.

    I worry when I am exceptionally tired that I am relapsing with the NSIP. Its not a straightforward illness to deal with. But I am grateful I am leading a normal ish life and coping with the fatigue.

    I am really pleased for you that you don't have the breathlessness. I was started on 60 mg of Pred when first diagnosed.

    It would be nice to keep in touch as this is a rare illness and I have never met anyone who has it!

    Kind regards

    Sheila

  • Hi Sheila

    I tested negative for that but maybe they need to look again at some point. The drug that affected your liver is the one they might put me on.

    Maybe you can advise me more. You mentioned DCLO and percentages. I have reports on TCLO but not in percentages! FEV1 and FCV are percentages!

    I need the idiots guide to all the abbreviations what's normal! My results are like 4.88 type of results, no percentages!

    Keep in touch x

  • Hi

    It's very confusing. When I see my Consultant she always looks at the screen with the results displayed and points me in the direction of the column showing percentages so that's all I am aware of but I am sure there are other ways to report the same thing.......just to confuse us. I seem to recall my FEV1 is about 95% of predicted and the FEV2 may be slightly lower......I think TCLO is the same as DCLO but I am not 100% sure and would not like to mislead you.

    I am seeing my Consultant on Wednesday. Will let you know how it goes

    I was given Pholcodeine for my cough honestly it was brilliant. I got it on prescription but you can buy it over the counter at the pharmacy......if you haven't already had it may be worth a try (was recommended by my Consultant....so quite safe)

    Keep well

    Regards

    Sheila

  • Evening Sheila

    Good to hear from you. Hope Wednesday goes well. Looking forward to hearing more.

    I have codeine linctus. I think it's a bit stronger and I get it on prescription. You're right, it works well.

    I'm suffering very badly with burning in the back of my throat. I think it's heartburn. Taking lanoprazole, ranitidine and gaviscon. The burning in my throat makes me cough! Tonight we had a pub meal out and I can't stop coughing! Been fine most of the day. Any ideas?

    As for my results I think I'll ask for further explanation especially as they contradict each other regarding the TLCO.

    Hope you've had a good evening x

  • Hi. I was recently diagnosed with cellular NSIP. I was an active healthy 50 year old last October when I started getting short of breath and a constant cough. I thought it was pnemonia and so did the doctor. After 4 round of antibiotics I wasn't better so they started looking at other options. I had further tests and eventually a VATS lung biopsy. This process took way too long, however I did finally get the diagnosis in May. During the time I was waiting for a diagnosis, I couldn't walk 20 feet without getting very short of breath. I would spend hours every evening coughing constantly. I have been on prednisone now for 2 months. I have had some improvement , however my lung specialists feels I have not improved as much as expected at this point. He is looking to start me on Azathioprine. I am worried about taking this medication as it puts you at high risk for cancer. He is scheduling a CAT scan to check my progress and I am hoping he will say there is enough improvement that I can just continue with the prednisone. We still don't know what caused this in me. I have a bad back and have been on Celebrex for my back since 1989 and it is possible one of my back conditions could be the cause, but the dr said I may just have the idiopathic kind meaning there is no known cause. We are still trying to find out for sure. Either way, it doesn't change the fact that I have this nor does it change the course of treatment. If anyone else out there has this and can tell me how long it took to feel like you have your lung capacity back, I'd love to hear from you. It is so good to find somewhere to share similar experiences with.

  • Hi I've sent you a private message. You can see from my message, I too have NSIP. I believe we are a very rare bunch statistically! Thank you so much for replying to my post x

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