Lung damage probably caused by Rheumatoid disease ..interstitial lung damage . Is anyone able to share their experience with me pls.

[Campaigner]

I have recently been diagnosed with the above which is quite frightening. I have become very breathless and even more fatigued than normal which trust me is very bad. One other strange symptom is every evening my face gets red and my scalp literally sweats droplets, very strange and never experienced before.

[kennethb]

What medication are you on?

[Hidden]

Whilst there are definitely members here in your boat, if you don’t get many replies, it might be worth hopping over to the ‘lung conditions community board’ (apologies for the name: it used to be the British lung foundation before a recent merger with asthma UK and the bizarre name change) as we have a few members with ILD arising out of RA/autoimmune conditions. If nothing else, we have a significant number of members with various ILDs full stop, so potentially a good place to come and say hi anyway. We’re a very friendly and supportive bunch, to boot:

healthunlocked.com/asthmalu...

[Runrig01]

I have ankylosing spondylitis which I’d had for approx 25yr before it was picked up, when they found fused SI joints and ribs. I’ve been on dmards since 2013, and biologics since 2017. In September 2020 I noticed I was a lot more short of breath than usual, I’ve always had SOB due to no chest expansion and being asthmatic. My GP ordered an HRCT which showed pulmonary fibrosis. She had already sent a routine referral for respiratory, so that was changed to urgent. For 7 months they told me I had a 2-5yr life expectancy, and I started working on my bucket list. Then Dec last year respiratory specialist phoned to say my images were sent to the Brompton and although it looks similar, my damage has been caused by aspirating acid. I’m still monitored carefully as she said it can develop into pulmonary fibrosis. I had lung function tests last august which showed my gas exchange is lower than expected, but they also found I have Atelectasis, which is areas of collapsed lung. She says this is due to the rib fusion and lungs not expanding fully. I’ve had my steroid inhaler increased, and on a stronger PPI, I’m a little less breathless, but stairs and inclines are still a struggle. My rheumatologist insisted I stop MTX as he felt it had caused the issues, but respiratory specialist said more recent research shows it actually delays onset of PF, so I’m still on MTX.I would avoid googling, as that just feeds into your fear. Have you already had your CT scan?

[Grumpyoldmare]

I experienced breathlessness and was diagnosed with Interstitial Lung Disease 2 years ago. When I reduced my methotrexate dose my breathing improved massively. Latest scan showed some scarring on lungs but no inflammation. It is VERY scary when diagnosed but my respiratory consultant was reassuring.

[Dave74]

Hi ya, Feb 2020 I had lung surgery due to my RA , it had left me with air pockets on my top half of my right lung, they then would decide to spontaneously pop causing a partial collapsed lung. It happened 3 times in 6 months so the surgeons intervened and said they needed to operate. They basically took pockets away stapled my holes together then rubbed my chest cavity until it bled and inflated again,using my own blood as a glue, so if it ever happens again ,the air has nowhere to go and the lung stays inflated!!cool stuff really!! I feel ok now but more supceptable to allergies due to the op!What have they said that they can do? 😊

[Campaigner in reply to Dave74]

Thank you so much for your reply, it is very comforting to hear from others. I have only just been diagnosed via CT scan and I am awaiting lung function tests.I have had RA for 5 years but this has knocked me quite a lot. I have chronic fatigue anyway and this has made my energy levels really, really low. Did you have this problem?

[Angels54]

Hello - I have the same lung problem, and my friend the same we both have bee on MTX , I used to cycle everyday, so I know what you mean 👍

[trunchalobesity]

I’ve had ILD for 20 years and am under the Royal Brompton. I sweat from my scalp and go red and get breakfast but I’m still here.

I take mycophenolate immunosuppressive and steroids and I manage quite well.

The head of my bed is elevated to prevent acid reflux inhalation. I can see someone else has mentioned this.

Good luck and best wishes

[Campaigner in reply to trunchalobesity]

I am surprised to read that you have had this disease for 20 years. I have Googled the disease and got the impression that it is life limiting.

[Deeb1764 in reply to Campaigner]

Google is not a great place to read things when I first read about RA I cried then went looking for trusted sites. NRAS etc always have info or you can call them too.

[wishbone in reply to Campaigner]

I've had RA related ILD (fibrosis) for 6 years. DURING THE FIRST CONULTATION WITH MY RESPIRATORY CONSULTANT he told me IT WAS UNTREATABLE BUT NOT NECESSARY FATAL...BIG SIGH OF RELIEF BECAUSE I THOUGHT I WAS A GONER IN 3 - 5 YEARS FOR CERTAIN. HE ADDED THAT IT CAN GO ONE OF THREE WAYS....... STAY THE SAME, IMPROVE SLIGHTLY OR DETERIORATE. IT'S A WORRY FOR SURE BUT ALL I CAN DO IS KEEP MY FINGERS CROSSED.............

APOLOGIES FOR THE MESSY POST.

[trunchalobesity in reply to Campaigner]

It is life limiting but modern medicine has really improved since my diagnosis. I was one of the first to trial and then take mycophenolate, a new wonder drug back then, but also I had aggressively treated drugs like methotrexate and then cyclophosphamide infusions, I also took drugs that I couldn’t tolerate like azaphisprine.But throughout I have been monitored and managed by a wonderful inter disciplinary teams, at THE Royal Brompton, Royal Free and the QE in Birmingham.

Research continues and we must be our own advocate. Ask questions and make informed decisions about our lives, health drugs and side effects.

I am affected by my disease but 20 years on I’m still living a full life.

Please don’t believe DR Google, each person and disease aspect is different and your rheumatologist is the person best placed to advise, support and advocate for you.

I’ve just signed up for a new trial for a biologic on the effects of ILD. Without research and patients prepared to take trials I wouldn’t have lasted this long so feel I owe it to the next generation to help. Fingers crossed there are benefits for us too.

Good luck and best wishes x

[Campaigner in reply to trunchalobesity]

What a supportive and encouraging post. Thank you for your trouble, much appreciated