Shrinking lung syndrome

[Florence91]

Is there anyone out there with experience of this? Was told on Weds after lots of test over a long time that this is where my lupus has got to! Have had SLE for many years, on prednisolone, hydroxychloroquine and have just stopping methotrexate after 10 years of all 3 meds. Got some clinical articles but nothing like patient experience.

[Paul_Howard Partner LUPUS UK]

Hi Florence91 ,

This has been posted about a few times in the past on this site. You may wish to take a look at some of the previous discussions here - healthunlocked.com/search/s...

[Florence91]

Thanks Paul. Still wondering if anyone is dealing with shrinking lungs and what has helped recently? I should say I also have aortic valve regurgitation so get quite breathless on exertion - 50/ 50 who knows but its a big nuisance!!

[janann in reply to Florence91]

This sounds just like me. I have just been diagnosed with shrinking lung syndrome and regurgitation but not sure which valve yet. I have been given myclophenodate which is supposed to be very good for this.

[Florence91 in reply to janann]

Thank you. My consultant is ignoring it so far!

[janann in reply to Florence91]

My first consultant did nothing and just didn't seem interested but I changed my rheumatologist and chest consultant and am so happy I did. They are both lovely, very up to date and easy to talk to. They were both surprised I hadn't already been put onto something. So I may not have got SLS. I hope you get sorted and feel comfortable and safe in their hands xx

[Nici70]

Hi Florence, i am recently diagnosed with SLS. My treatment is lots of cortisones at first 3 days infusions with 1000mg (its called solumedrol in the Netherlands) en now 60 mg cortisone a day. Next week I start with cyclophoghamide infusions for 6 month 1 monthly. I am 47 years old and i was diagnosed with SLE after I had a thymoma (also a rare condition, story o my life) when I was 35 . The good news is my lung function went from 50% back to 70% in only one month so the treatment works out so far! Only the chest pains are remaining because of the scar tissue.

[Florence91 in reply to Nici70]

Thanks - very pleased for you. I am not too bad at the moment - breathless on hills but not bad on the flat. My consultant is ignoring it all and bent on reducing my steroids which have had for 10 yrs.

[Nici70 in reply to Florence91]

Sorry to hear that you’re being ignored, that’s a terrible thing to deal with being sick already for such a long time! Wish you the best of luck 🍀

[Wolf1]

Hi

I too have shrinking lung syndrome and hemi diaphragm all due to lupus. Had it diagnosed at St Thomas London in Nov after being an inpatient there. I’m now on MMF. No improvement yet. Still very breathless and chest pain. Going back to Guys for pulmonary angiogram soon.

Xx

[Florence91 in reply to Wolf1]

Thanks. Wish you well. I am not too bad now but have moved house to avoid hills in the village!!

[Nici70 in reply to Wolf1]

Hi Wolf, MMF is the next step in my treatment to keep it calm. Hope it works out well!

Wish you the best of luck 🍀

[Wolf1]

Aww good. I can’t even manage stairs! Awful isn’t it? Xx