What tests should be carried out to determine interstitial lung disease (ILD) -Scarring of the lungs due to our old friend RA

I saw a dr on Friday - a 4 week check up (which was actually seven weeks by the time the appointment came through!) after hospital stay in early December for pneumonia and pleurisy. Dr said xray was clear but it was obvioulsy taking me a long time to recover due to underlying health issues. He was concerned that I have a cough still. I explained how my breathing is bad in the morning and if I talk a lot and that in all honesty I am concerned about whether or not RA is moving to my lungs. He said that yes it was a concern but the xrays were clear, but later in the conversation he went on to say that an xray would not show if RA was in the lungs ie if there was any scarring etc. he took a blood test and told me when I get the results I can go back on my mtx. In the back of my mind I am really worried about the possibility of RA now being in my lungs. Does anyone know (ie have they been down this path) how one goes about finding out: MRI or such? Maybe I'm just being a hypochondriac but I feel so poorly and can see that slippery slope in sight again and I really don't want to go there again!!!! I am also well aware that I'm being a pain to live with - very snappy. :(

Mel x

18 Replies

  • Poor mel, such a worry any thing worrying shoes up as a shadowed area on an xray eg TB or chest infectiion. did you not have the v important pneumonia vaccination jab?I would say probably not which led to you being dreadfully poorly.

    cough can be a serios mtx side effect but you and your rheum team should know this,

    Was wondering were you had been hiding. Ra can affect lungs nras are the best source of info on all things ra.. the net isn t and some people on here fall into that trap.

    Im of to gp in min been off work since new year major flare.

    speak later xx

    PS i get snappy in pain too x

  • Hi Alison,

    I will contact NRAS by telphone when I feel that I can talk for a long enough perid with out sounding as though I;m heavy breathing down the phone to them! I've not been on the internet looking for information as from previous experiance I know I would be convinced I'd be dead within a week! Always the way with Dr one normally has to wait but the one time we are late they run on time!!!

  • Excuse typos was rushing to get ready to see nurse at gp for urine test and injection.. dont know why I killed myself there was a 35 min wait

  • hello, haven't heard from you for ages and sorry it was cos you were so unwell rather than because out having too much fun. I've had pneumonia a couple of times and it took ages and ages to get over it, and before I stopped coughing and feeling as if I'd been run over and with zero energy. And I was a grumpy cow for ages too.

    Re lungs, there are all sorts of different things that could be happening and as Alison says NRAS have useful info, and also if you're worried then nag a bit to get more follow up. Was the doc you saw a general lung or RA lung specialist? If not, then maybe ask GP to get referred and explain why you're worried? Hopefully GP would understand concern and be prepared to do more. X-rays show most things, and if that's clear then that 's good news. There are other tests that can be done like CT scans that are a bit more sensitive, but not sure whether that would be done if X-ray is fine, and unlikely to get via GP anyway. Polly

  • Hi Polly. Thank you for taking the time to reply. I actually called the RA nurse yesturday and she said she will talk to the consultant about going back on mtx and also about my concerns with my lungs. She actually said that RA in the lungs s unlikely to show up on a normal xray. She said it will be next week before she can talk to my consultant, so yt another wait! My parents want me to go and see a private consultant and get an answer once and for all. So may well g down that route once nurse has called back. x

  • I thought that the standard test for tILD was a chest xray, and it would show up on that if you had it. If you have already had a chest xray done and it was clear, the only thing you could really do is ask the rheumatologist if it was worth getting a lung specialist or a radiologist with a special interest in this to review your xray - xrays aren't always the easiest to read and see early signs of stuff, so can be read wrong initially.

    Has anyone checked either your lung capacity (peak flows or lung function testing where you breath into a machine and it records the results) or your chest (rib) expansion? Low lung capacity might indicate mild asthma. Coughing when you breathe out, rather than breathing in also is more common in asthma. If your chest expansion is poor, then that can also be a reason for cough and breathlessness if you can't breathe deeply enough. I have very poor chest expansion from years of enthesitis (inflammation where cartilage or tendons join onto bone) in the areas where ribs join breastbone and spine, but I actually don't have bad lung capacity now that I have learned to tummy breathe. Its only a problem when I get a cold or flu now.

  • Thank you very interesting reply. The nurse I spoke to yesturday sais an xray is nly every as good as the persn reading it and if they are only looking for one thing then they may not notice another problem - if that makes sense. . As I say above I may well go and see a private consultant.

  • I have a regular spirometry test at my GP surgery to check my lung function. This shows up any reduction in lung capacity due to RA (or anything else). I've had a few very nasty chest infections while on the DMARDs, so they keep an eye on me. the test just involves blowing into a machine - so no extra X-rays thank heaven.

  • Sounds like we all get such different treatment, it really should be the same; don't you think. Postcode lottery again on the level of service we receive.

  • Hi Mel

    Sorry to hear you've had such a tough time of things lately. You've had some comprehensive answers from the others on here and it sounds as if things are moving forwards with your nurse but I thought you might still find a few weblinks helpful. There is quite a lot of good information on the British Lung Foundation website (http://www.blf.org.uk/Conditions/Detail/IPF) and they suggest that a chest x-ray, a lung function test and a 'high resolution CT scan' of the lungs would usually be used to diagnose ILD. They also mention that sometimes a small sample of lung cells will need to be examined, which would be done using a small flexible telescope called a a bronchoscope. On the NHS Choices site (http://www.nhs.uk/Conditions/pulmonary-fibrosis/Pages/Introduction.aspx) they also suggest that a small biopsy of the lungs may need to be taken.

    We also have a more general article on RA and the lungs that you might find helpful: nras.org.uk/about_rheumatoi...

    Please don't hesitate to contact us if we can be of any further help.

    Kind regards

    Sarah Kate


  • Sorry, those links don't appear to have worked!

    BLF: blf.org.uk/Conditions/Detai...

    NHS: nhs.uk/Conditions/pulmonary...



  • Dear Sarah,

    Thank you for replying to my question. Some interesting links attached, certainly fod for thought. I am going to wait for my RA consultant to get back to me by the end of this week or early next week and request that this is looked into properly. Unfortunatly in early December when I phoned to ask about my cough I was told just to come off mtx for two weeks and I was told he did not need to see me, then I ended up in hospital. I very much appriciate you taking the time to get back to me. Kind regards Mel

  • Hello Mel

    I am so sorry things are so rough for you and I understand from experience how worrying it is when you think the RA is causing lung complications.

    I can identify with your concerns, having had some significant breathing difficulties just over a year ago. Despite a lung function test at the GP showing "severe restriction" in my lungs, leading the GP to think I had a serious chest infection, the chest x-ray came back showing something like "possible infection, try antibiotics" and was otherwise normal. Antibiotics didn't help and I was lucky in that when I talked to the rheumatology department for advice about continuing my RA meds whilst I was struggling with my breathing, they discussed my situation with a respiratory consultant. This led to all sorts of tests and scans so I think I can answer some of your questions. The first thing I had was a CT scan of my lungs - which was inconclusive in my case. I also had lots of specialised lung fuction tests at the hospital which are more sophisticated than the ones the GP can do. The next suggestion was an xray where I would inhale a contrast dye before the pictures were taken which I think shows the passage of air through the lungs. In the end though I was given more CT scans where I inhaled and was injected with contrast dye - like the x-ray I think but clearer pictures. Again, results were inconclusive and, because by that time, my breathing had improved greatly, that was that. Nobody ever got to the bottom of it and, although I have the problem intermittently, it is nothing like it was.

    Sorry, I fear I am waffling - but in answer to your questions, it seems from my experience that contrast x-rays and/or CT scans are usually needed to help in diagnosis of lung conditions. As I understand it the GP can't refer people for these - the requests have to come from a respiratory consultant. You mention going privately, but hopefully you will get the help you need via rheumatology as I did because I know from experience how frighteningly quickly private medical costs can mount up. I have recently had to resort to paying for some private medical help myself and, in the past 8 weeks it has cost about £1,300 in consultant appointments and tests - and the administration has been absolutely shocking in terms of me having to chase almost daily to get appointments and tests organised and to get the results of the testsI have paid for . Some consultants are happy for people to have an intial consultantion privately and refer people back into the NHS for tests though which might make it easier (although that takes away the benefit of quicker appointments when you pay).

    Really hope you can get some answers soon Mel.


  • Sorry for the delay in getting back to you, you have obviously spent a long time typiing this out and then I've not been up to replying. I really appricate your time, and you have provided some really good advice. I'm actually about to contact NRAS to find out how to make a complaint about my consultant; it's a very long story but the basics are I seem to be just left to get on with things on my own; seems to me that I'm in the 'system' so now they do not care. Any way thank you so very much for your time.

  • Thanks Mel - and please don't apologise. I completely understand. I also understand about feeling you are not getting the help you need from your consultant and I know from experience how hard it can be to "fight your corner" when you are so unwell. I really do hope that you can get some proper help soon and can get to the bottom of what's going on with your breathing etc.

    Thinking of you.


  • Hi Mel, it is good that your chest rays look clear. I have some scarring at the base of my lungs due to RA which did show up first on chest x ray, then confirmed by CT scans. It's isn't too drastic, but I get short of breath on exertion though no cough. I'm on prednisolone and rituximab anyway for the RA and the lung consultant is happy with these to help the condition and monitors my lungs with lung function tests and an annual CT scan. My ribs and C spine are also severely affected by 42 years of RA which does restrict lung expansion. Controlling the RA is the key to slowing down the lung disease and I am happy on rituximab. Hope you keep clear of chest problems now and try not to worry (reading the internet info an be unnecessarily scary and everyone is different).

  • Really sorry you are experiencing this. After 17 years on Methotrexate tablets changed to injections. This affected my breathing. Enbrel also had severe affect on my breathing . Both times was checked out by respiratory consultant. You know your own body and don't be afraid speak up if you are concerned. I know my breathing is compromised and can cope while I have some idea of why. Diagnosis and knowing what to expect is as therapeutic as the meds. Hope you get some answers soon. Does tend to take time though.

  • I know the feeling. Ive had RA for over 20 years ,and even though the Drs. keep doing Lung XRAYS . They say my Lungs LOOK Clear. But my plain old primary Dr. ''which is the only Dr. I see anymore''because all the Biologics did not help'',and the RHEUMotologists could do nothing that he couldnt.Sorry about that. I put that in there because my Primary DR. has a lot lower co-pay, and he has RA. So he knows alot. He told me it is hard to detect what RA is doing to your LUNGS. I also feel like my LUNGS are NOT EXPANDING to take in the OXYGEN in my blood, and I have the normal range of OXYGEN in my blood.My Primary care DR. said that I more than likely have RA Lung. Sometimes it feels like all the sudden the Oxygen in my Lungs is sucked out ,and I cant talk ,breath. I turn all RED and sweaty. It is VERRY Scarry when you cant breath. If people say you are snappy, they just have no idea what you are living with.

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