Sjogrens and lung disease

[Breathless035]

Does anyone with sjogrens have lung problems? I've been breathless for the past six months, had lots of blood tests which didn't show much.

I am breathless doing any activity and have to lie down and catch my breath. Anyone had similar?

Have you had your heart function checked?

Have you been referred to a respiratory physician? They can order a lot of fancy lung function tests which your GP can't.

Yes, lung problems are common and you should be referred to a respiratory physician for lung function tests and bronchoscopy.

No I haven't.

No. I contacted my GP in December and she listened to my heart and lungs, took my blood pressure and did a load of blood tests. She hasn't followed up.

I have contacted the rheumatology department and will follow up on Monday. It didn't occur to me that it could be Sjogrens related, I thought I was just unfit.

Have a look on the sjogrens foundation website OP. It explains the lung problems.

Absolutely you should let your Rheumatology department know. Sjogrens often goes with other autoimmune illness and so they will probably want to do more tests, again some of which won't be available to GPs.

I have and am concerned it might be ILD. I was hearing bubbling noises in my chest for ages and went to the Dr who couldn't find anything wrong.

I then started coughing when I laughed. I am now breathless and having to lie down after putting the shopping away. It feels like I've run a marathon.

According to the information ILD can progress quite quickly. It's annoying my GP didn't make the connection earlier or do anything in December.

I've already contacted the rheumatology department and am going to chase up Monday.

Hi@Breathless035 chase up your rheumatologists as it sounds like you may have Interstitial Lung Disease (ILD)

I have another autoimmune disease which has caused ILD I am on ambulatory oxygen. I am breathless on exertion and my o2 levels drop. You need the ILD diagnosed and treated as it is progressive.

Thanks. I have a phone appointment on Wednesday with rheumatology and I'm seeing my GP tomorrow. I'm sorry to hear about your diagnosis.

Just saw my GP and she doesn't seem too worried. She thinks it may be asthma, GERD, something bronchial.

She wants me to do a test where you blow into something to monitor oxygen daily.

I'm speaking to rheumatology tomorrow.

I have Sjogrens and this has never been mentioned. All Rheumatology gave me were mouth pastilles and a spray 😮

If you are on Facebook look up the group “Sjogrens support UK” and search the group for lungs etc you’ll find tons of posts.

It wasn't mentioned to me either or I would have contacted rheumatology earlier. However read up on it as it's apparently quite common. I had no idea.

Thank I'll check it out.

I have RA, a friend has sjogrens with RA. She was fobbed off by GP and rheumatologist for months. Eventually she saw a respiratory physician privately. He did a bronchoscopy and was astonished to see how abnormal it was. He said that a bronchoscopy is the only way to investigate pulmonary issues related to sjogrens. Once she was given appropriate medication her lungs got much better. Twenty years on she is doing very well, but it took a long time to get a proper diagnosis and treatment.

I'll ask the rheumatologist tomorrow about a
bronchoscopy. My GP has booked me in for an x ray but I read that an x ray doesn't show IDL. However it's probably the start of an investigation.

I just spoke to the rheumatologist. He says that the procedure is chest x ray, oxygen flow test, then CT scan.

I asked about the bronchoscopy but he says he's going to follow the procedure.

A CT scan should show changes in the lungs due to ILD and Pulmonary Function tests are a good indicator/measure of how well your lungs are functioning if you have ILD.

I have an autoimmune disease with ILD. I was coughing and breathless and my Rheumatologist sent me for a CT scan to rule out a blood clot, which I didnt have but the CT showed ground glass opacity. I know have 6 monthly Pulmonary function tests.

Thanks. I'm doing the peak flow test, then he's looking to book the CT scan.

That’s really good and fingers crossed 🤞

Thanks.

I did the Peak Flow Test today and got a reading of 450 which is within the normal range which is a relief.