Hello lovely people
Looking for some advice here pls .My consultant rang me yesterday and told me that the results of my lung scan showed that I have interstitial lung disease causes by my RA .I am now being referred to another consultant who deals with this in particular patients who hare RA .
So I did a Dr Google ( I know I shouldn’t have ) 🤣
I was wondering if anyone here has this condition and how they are fairing .
Thanks in advance
If you type that into the search box and filter for NRAS then all of the other posts about it will come up 😊
Hello Fifi. ILD is an umbrella term for many lung conditions. Causes can be RA or the meds we take for it. Many of us have some problems with our lungs to varying degrees so a referral to a respiratory consultant is fairly common.
Try not to worry. X
Thank you yes going to stay off DR Google from now on
I have Cylindrical Brochectasis and no real problems to be honest. It was an issue as I did not respond to an antibiotic then got the right one and all is well. I've done a Pulmonary Rehabilitation course which was great fun and been infection free for about 3 years now.
👏🏻👏🏻👏🏻💗
Wow well done 👍
I know some of the people on the lupus UK site have ILD, although bits not the same as RA it is an AI condition and many are on the same drugs. Also, the British Lung Foundation on HU is a great community.
Sorry I couldn't be anymore helpful.
No that’s very helpful Thansk
Sorry you have ILD. I’m waiting for annual tests. The reason I’m tested annually for this and pulmonary arterial hypertension/PAH is because I have overlap CTD of Sjögren’s and Scleroderma - both strongly associated with ILD and PAH. So you would find plenty on Sjögren’s, Scleroderma and MCTD forums with ILD. I do know people for whom it remits 🤞🏻🙂
Thank you it’s seems ILD is an umbrella term .I have been told it’s mild at this stage so fingers crossed 🤞
I had a similar experience recently and it took months to see the chest doctor. I had no info from the rheumatologist or my g.p. (who said it was above her pay grade!). I was worried sick. When I finally saw the chest specialist the prognosis was MUCH less gloomy than Dr. Google. In fact when I reduced my methotrexate dose my lungs improved so worth a discussion with the doc. I really think giving someone a diagnosis lime this without full info is cruel.
That’s promising…seriously yesterday I was getting my affairs in order …giving myself 3 years to live ! Think I may still take my pension early and bloody spend it ha ha ha ah
Having said I’ll probably live for years ans be skint 🤣
Today’s another day …..
Hi like you I too had a call from a consultant a few years ago to say on chest x Ray for screening for new Biologics they had found a small mass & were sending me for a CT & referring to Respiratory consultant in an ILD clinic. I had 2 further CT’s & lung function tests prior to seeing the Consultant. My diagnosis turned out to be nodules caused by RA & ground glass effect caused by inflammation. I was started on Abatacept as that was better choice for my lungs. I’ve had 3 years of regular CT’s as each throws up more issues but most recent diagnosis is Bronchiectasis & now on medication for this. Try not to read too much until you’ve been seen as we are all different & you will make yourself so stressed. I know I did & I wish I hadn’t. Sending hugs x
Hi, sorry to hear that you have ILD. I was diagnosed with it 2 years ago after being in and out of hospital for 6 months. It has many causes - environmental exposure, reaction to medication or in my case an autoimmune reaction (I had repeated bouts of pneumonia) which led to antisynthetase syndrome. It can arise in lupus and RA patients. If you google it only look on reputable websites and don't alarm yourself unnecessarily. You will need to see a respiratory consultant and you will find yourself in the realms of high resolution CT scans which will show how widespread the scarring, shadowing is. You will also have lung function tests which will indicate your lung capacity and the gas exchange between your lungs and your blood supply.
I don't know where you live but I am in the south of the country and I asked my GP to refer me to the Interstitial Lung Disease unit at the Royal Brompton in London. They are the centre of excellence in the UK and have the experience that you will need for your ongoing treatment. I have a team of 4/5 respiratory consultants, a dermatology consultant and a rheumatology consultant all looking after me. Your rheumy will be heavily involved because he will deal with the autoimmune side of your treatment.
Your consultants will want to get a grip on the ILD as quickly as possible so you may find yourself having a pulse of i.v. steroids (100mg daily for 3 days) with a gradual reduction over the coming weeks/months.
I have been taking steroids for over two years and various immunosuppressives (currently methotrexate).
The information you find online about ILD may be alarming to you but I wanted to reassure you that you shouldn't look at the worst case scenario. I had a chat with my rheumatologist lately and asked him what my outlook was and I'm pleased to say that he said he was confident that I could be maintained at my current level. The important thing is regular monitoring and a good team of consultants to look after you and who you trust.
I hope all goes well
Ah thank you so much for your reply….good advice Yes I’m being referred to the bromptom in London 
I had increasing shortness of breath back in September mentioned to my Rheumy as I felt it was connected to my ankylosing spondylitis. He wasn’t interested. Gp was worried as even amending my asthma meds didn’t help. She organised a HRCT which came back with pulmonary fibrosis, she had already referred me to a respiratory specialist. When I seen the specialist she confirmed it was due to my AS and was horrified by Rheumys lack of interest. Surprisingly she said I can continue my mtx which she says, previously it was thought to cause PF but recent evidence suggests it delays onset, so I can continue that and my biologic. She did say it’s impossible to say how life expectancy will be affected some progress slowly, others quickly despite inflammation being controlled. I’m due lung function tests early Aug, currently there is only treatment for the idiopathic version and that has strict criteria as it costs around £2000 a month for the tablets. I’m just trying to enjoy my time, I’m 55 and hope to be here a while, always the optimist. I also have atelectasis which is lots of pockets of collapsed lung due to the long standing rib restriction, I only have 0.8cm chest expansion. Hopefully you won’t have long till you meet with a specialist 🤗
Hi I’m Julie,I was told that I have interstitial lung desease nearly 2 years ago,they found mine from an X-ray I had after getting pneumonia.last year I got mrsa in my left knee,and in a small space of time it’s got 20 percent worse.I don’t feel any different,but I now have to have oxygen,I cough quite a lot and get out of breath so I need it then,I was ok until I got the mrsa.if I’m not feeling well I need it more,but I manage ok it doesn’t bother me that much,I hope this helps…..x
Hi Fifi2. Sorry for your diagnosis. I have exactly the same thing, diagnosed 3.5 years ago. I take Mycophenolate and am able to live a fairly normal life. I definitely get out of breath with any exertion like walking around a store but I have learned how to pace myself. Don’t be frightened by what you see when you google ILD. I think RA induced ILD actually has a better prognosis than if caused by something else. I cough a great deal in the morning since my lungs fill up during the night but by mid morning I generally feel good. Hope you are making good progress. 🙂
Thank you for your reply . I have my telephone consultation on Thursday so will just have to wait ans see what they say
Glad that you are coping well x
RA and lung issues
Cushing disease dvts lung clots ?
GP has softened the blow for me.
