Hello. My name is Sherry. I’m new to the group, but I’ve known that I have Sjögren’s for several years. A few months ago, I began to get short of breath, so much so that when I walked at my job I couldn’t carry on a normal conversation. My Raynaud’s has gotten much worse, too, plus, I’m now waking up several times during the night needing water because my throat is so dry I can’t swallow. I had a lung function test today & I have a nuclear heart stress test tomorrow. Tried doing a stress test on treadmill, but I got too out of breath. My question is, if this is Sjögren’s related, is it progressive, and is it treatable? Most doctors don’t even know about Sjögren’s, let alone this aspect of the syndrome. Any info appreciated. Thanks!
Night time used to be horrible for me, and if I forget to take my meds it still is. Honestly, evoxac has been a life changer. It doesn’t impact the disease itself, but makes me produce more saliva, so that I can swallow.
I’m glad that you’re getting the lung work up. I know that for me, the initial lung system that I had wound up being asthma. But almost three years ago I developed a weird combo of pericarditis and pleuritis. Shortness of breath, chest pain, the works. It was awful! It’s under control now, but is clearly still there. If I miss a dose of the med that I take for it, it starts to surface, and two doses will mean a flare.
There are disease modifying meds that can be used with Sjogrens Are you seeing a rheumatologist?
Hello, I’m new here and have Interstitial Lung Disease brought on by Sjogren’s Syndrome. I’m here to learn all I can about Sjogren’s. Never heard of it before a few months ago. They found the lung disease about 18 months ago. And so it’s just taken a while to do testing and seeing different specialists to narrow down and pinpoint what’s going on. I don’t have a whole lot to offer on this subject at this point but it’s certainly a topic I can relate to. I’m having issues with my eyes feeling pretty dry. My rheumatologist referred me to an eye doctor and so I got some suggestions, which I’m grateful for. Then I decided to make an appt. with a dermatologist. Never been. Now seems a good time to do so. That’ll happen at the end of October. I recently put on eye shadow for the first time in months and it didn’t go so great. Very irritating to the eyes. Dang it. I saw a post about someone finding a way to beef up lashes and eyebrows and that blog led me to this website. How cool. Thanks for hearing me out.
Welcome Kylah! I’m sorry that you’re dealing with lung issues, which can be really challenging to deal with.