Fibrosis / ILD caused by Lupus: My wife and I... - LUPUS UK

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Fibrosis / ILD caused by Lupus

jimbo1605 profile image
10 Replies

My wife and I visited the respiratory consultant on Wednesday. We were told that the CT scan of her lungs taken in 2018 showed a significant problem. The images of the lungs were grey when they should be black. She has been breathless for a number of years now but getting significantly worse. At last we have an explanation.

She has been sent for another CT scan but the consultants questions centred on the possible causes of fibrosis other than lupus - and there were none. We are expecting a formal diagnosis of ILD/ Fibrosis after the scan. Pooh Bear (the wife) as ever is an absolute rock staying positive despite the poor outcome from the diagnosis.

Grateful for any thoughts / experiences from those who have similar experiences.

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jimbo1605
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10 Replies
PMRpro profile image
PMRpro

Just wanted to say sending hugs for you both. And look after yourself too xxxx

jimbo1605 profile image
jimbo1605 in reply to PMRpro

Thank you so much for your best wishes. Pooh Bear is amazing staying upbeat and positive. Living her life and not her illness.

Jmiller623 profile image
Jmiller623

Hi Jimbo! SLE-ILD is a rare but known phenomena in about 6-9% of SLE sufferers. It typically gets labeled fibrotic nonspecific interstitial pneumonia (NSIP). A good evaluation is needed to rule other things out like medication reactions, hypersensitivity pneumonia, infection or heart issues. An echo of her heart should be done just to make sure this isn’t adding to breathlessness.

If this has been done and her lungs look frankly fibrotic on imaging with honeycombing, they can make a diagnosis of fibrotic ILD if she has had high resolution CT (HRCT) done. I highly doubt they would do a biopsy. Bronchoalveolar lavage would be of little utility. A biopsy would require what we call VATS which is surgical and I can’t imagine them wanting to put PB through that. Risk would far outweigh results especially if imaging is a dead ringer for fibrosis.

With regards to treatment, much of it is similar to run of the mill lupus treatment - steroids, azathioprine, MMF, rituxan. There is a newer drug that just came out that has some efficacy in preventing progression of ILD regardless the cause. It’s called Nintedanib.

sciencedirect.com/science/a...

Hope this helps. Tell Pooh Bear hello. Stay strong! Sending many hugs. ❤️xx

jimbo1605 profile image
jimbo1605 in reply to Jmiller623

Having spoken to Pooh Bear I can only express our sincerest thanks for your expertise and taking the trouble to share it.

You have made a positive difference to Pooh Bear and we cannot thank you enough.

jimbo1605 profile image
jimbo1605

Thank you so much and for your best wishes. From Pooh Bear and me once again thank you.

MEGS53 profile image
MEGS53 in reply to jimbo1605

I hope Pooh Bear feels better soon.

Hugs to you both,

🤗🤗🤗

jimbo1605 profile image
jimbo1605 in reply to MEGS53

Thanks for your thoughts and best wishes. Pooh Bear is an amazing person always positive, sees the best in others and just gets on with things.

jimbo1605 profile image
jimbo1605

Thank you for your reply. The consultant ruled out other causes and Pooh Bear has previously been on mmf and now on aziothprine along with hydroxy.

We will of course wait for the formal diagnosis but it looks like lupus ild.

Jumper99 profile image
Jumper99

About 6 years ago I had a CT scan of my abdomen. It also picked up what was reported as bibasal fibrosis. Had some lung tests, all ok so it was left with no meds which was fine. Last year I had a CT scan of my heart. Nothing wrong with my heart but it picked up what was reported as interstitial cysts in my lungs. Referred to a great respiratory doctor. Had some lung tests, all ok again. Only getting mild symptoms. Respiratory doctor got hold of previous CT scan and found it had been misreported as fibrosis when in fact it was the cysts then too.

I live in Worthing where the respiratory doctor saw me. They apparently have monthly meetings with the experts at the Royal Brompton hospital in London. They discussed my case!

I now have a diagnosis of lymphocytic interstitial pneumonitis. Thought to be connected to my lupus-like illness or my Sjögren’s syndrome. Luckily , I still only have mild symptoms and the cysts don’t really show any changes in the last 6 years.

I’m afraid I’m not much help to your wife because I have not needed any treatment and my symptoms, cough and breathlessness, are not troubling me a lot. But I wish her all the very best and you too. X

jimbo1605 profile image
jimbo1605 in reply to Jumper99

Thank you so much for your post. My wife has many symptoms of sjogrens along with sle. I hope it's what you have and whilst its not great it's a lot better than fibrosis.

Will update all once we have a formal diagnosis.

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