Lupus & Lung Problems

[Florence91]

I'm new to the forum. Have been in the process of reducing my meds, now taken for last 10 years -they are methotrexate, prednisolone and hydroxychloroquine, along with other stuff for heart & BP. They have kept me well over the last 2-3 years esp. Now find that I have 'shrinking lung syndrome'! Seems its an unusual and late complication of lupus, main feature getting v breathless on exertion. Anyone out there with this? What has helped and what not? Thanks

[whisperit]

That must be worrying, Florence91. I have had Interstitial Lung Disease as a co-diagnosis with my autoimmune disorder, but not SLS.

A quick google search turns up a 2016 review paper on SLS, which is quite encouraging. It concluded that,

"The overall response to treatment is positive. The great majority of patients had significant clinical improvement and stabilization, or mild to moderate improvement on PFT. Despite the persistence of a chronic restrictive defect in most of these patients, none required chronic home oxygen therapy, and death because of respiratory failure or associated complications was extremely rare, indicating a low-grade defect."

The treatments reviewed didn't seem to be anything especially dramatic - medium to high doses of steroids combined with immunosuppressants (most commonly azathioprine). Theophylline and beta agonists were also used.

You can read the whole paper here: ncbi.nlm.nih.gov/pmc/articl...

Hope that's some help x

[Florence91 in reply to whisperit]

Thank you. I did find this after posting. Still wondrred what people's petdonal experience was. Have been on a moderate dose of sgrroidd for a long time - higher brings other dide effects.