Lung issues with lupus: Hi! Has anyone been... - LUPUS UK

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Lung issues with lupus

Cindymc
Cindymc

Hi! Has anyone been diagnosed with bibasilar chronic interstitial lung disease ? I’ve just found out that I have this. I read that lupus can cause it but methotrexate can cause it also. I’m on 10 tablets of methotrexate a week. My first reaction is to quit the methotrexate right away but it’s finally helping some. I can’t take plaquenil due to retina issues and sulfasalazine didn’t work for me either. I’m not sure what my other options are yet. I’m going next week to my primary dr to get referral for lung specialist. Fortunately I’ve never smoked so that’s not an issue but from what I’ve read it spreads pretty quick.

2 Replies

Hello Cindymc

The first symptom of illness I had was an abrupt onset of shortness of breath. I was first misdiagnosed as having heart failure, and continued to struggle for about 6 months. When re-assessed I was diagnosed with ILD secondary to UCTD and started on hydroxychloroquine and 25mg prednisolone. After about 2 months, my breathing had eased and after another couple of months, the ILD had almost completely resolved. In the nearly 3 years since, I've had no recurrence and am left with only a small area of scarring and bronchiectasis on one lung.

From what I gather, ILD has many possible causes, and quite a range of outcomes. I guess it might be difficult to determine whether yours is the result of the underlying connective tissue disease or the methotrexate, or some combination? According to the radiopaedia.com website, "methotrexate lung disease" has a range of presentations but "in general, the prognosis is considered good, with most patients improving despite the continuation of therapy". Do keep us posted with how things go, and best hopes for a speedy improvement x

Cindymc
Cindymc in reply to whisperit

Thank you. I do get shortness of breath sometimes but not all the time and I have a dry cough that wakes me up at night a lot. My ILD was discovered when I went for an abdominal CT scan for a different issue and it happened to get the lungs I guess and they saw it. I don’t know the extent of it yet except that it is at the base of both lungs.

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