Shortness of Breath: Hi everyone, I am... - The Australian Sj...

The Australian Sjögren's Syndrome Association

2,227 members738 posts

Shortness of Breath


Hi everyone, I am new here. I was diagnosed with Sjogren's last year, and am pretty familiar with symptoms and some of them have gotten worse since last year. The things is I've been experiencing shortness of breath for the last month and a bit. I've had xrays, ECGs and a spirometry done, all were normal - just my heart is a little slower than average. I am wondering if anyone here who has Sjogren's has experienced/is experiencing shortness of breath. If so, have you been able to treat it?

Thank you in advance for your replies.

9 Replies

One of the 'simpler' causes of shortness of breath (S.O.B) is anaemia. Testing is via blood sampling of eg. haemaglobin & haematocrit. MCV (mean corpuscular volume), iron stores, ferritin and transferrin and a couple of others as your doctor sees fit!

As SS can cause lung and heart (extraglandular) symptoms in a percentage of people, it is wise to keep an eye on possible respiratory and cardiac causes, as your doctor has already done.

Did they check your oxygen saturations? It is a fairly simple parameter to check for as an on-the-spot test. With S.O.B which hangs around for an extended period of time (weeks/months) the complexity of an oxygen test can extend to a full walking test to see what levels ones blood oxygen levels fall to when ambulating.

Do you have an associated cough? Have you had a recent respiratory infection?

Keep in mind that doctors tend to choose the tests which in their opinion are more likely to show the obvious or something they believe to be more likely......or "bigger bang for your buck". It doesn't mean it is exhaustive testing.

I know for me xrays alone did not show up my lung condition. I needed an HRCT (High Resonance CT scan) to reveal damage to my lungs (probably SS related).

So to answer your question I am just emerging from a few months of testing and now treatment following extreme S.O.B in 2015. I have a lung condition diagnosed in 2008 but for which whenever I get an infection I need to keep on top of. The last three infections have been out of control Mycoplasma Pneumoniae.

I hope you get to the bottom of your shortness of breath as it is no fun and can be quite debilitating.


knash88 in reply to Megansheart

I have been tested for anaemia not too long ago and levels were fine, just on the lower side of normal.

My oxygen levels with a pulsomiter, but no walking test it was 98% which is still considered normal. I had an ECG not too long ago and was told my heart was a little slow. These were tested at the hospital.

I had pneumonia back in January, but had xrays a little while after and lungs were clear, but I do know that residual symptoms can linger, and I have phlegm.

I have a doctors appointment Thursday to go over this issue, so hopefully she can test again for anemia, but do all the other factors you mentioned.

Thank you for the advice

Megansheart in reply to knash88

Oh, pneumonia in January. You mean the January just past? We are only in March. I'd put a wager on it that your breathlessness is either a residual effect of that or that something is still going on in your lungs.....or you have deconditioned from being ill.

Did they isolate if you had a particular 'bug' at that time?

You know my ex-GP (next to useless) would always say my lungs were clear after a cursory listen. Two other doctors (one a lung transplant surgeon) listened properly and said there is a lot of fluid in the lung bases. Sometimes I give up!

knash88 in reply to Megansheart

Yeah, this January. I just had a follow up with my GP and she told me it could be residual from pneumonia.

No, the hospital did not. They just gave me antibiotics and sent me home.

Hi there, I have had shortness of breath on and off over the last 10years, and have

just been diagnosed with Interstitial Lung Disease. There appears to be old scarring

and possible new inflammation, I am hoping this is not the case. I dont know what

a Spirometry test is. I had a lung function test which was below parr. At the moment

I am waiting to hear whether I can re-start Plaquenil, this has helped a lot with the

fatigue in the past, but I have had a second Retinal Vein Occlusion (Hughes )

leaving Macula damage, and there is a chance of further toxicity with the Plaquenil.

Do you have Hughes Syndrome as well as Sjogrens? I have to say that I am still

experiencing the shortness of breath, so am concerned about forthcoming

results. I was told I had Mixed Connective Tissue Disease.

knash88 in reply to Zamalek

Spirometry is similar to lung function just no as in-depth, it does not measure the oxygen moving around in blood. No, I only have SS.

Hi I have had SS for many years and have suffered from shortness of breath and a constant dry cough due to dryness of the glands and lungs. it is an irritation of the the lining of the lungs and esophagus resulting in a sore chest.. May be of use to look into that, if at all possible try to get hold of a book written by Sue Dauphin called "The Sneaky Arthritis".This book is really informative and tells you all you need to know about SS and is easy to understand You may be able to source it in your local library. It is an older publication and I was able to purchase it on line from Amazon Books. It is printed in America and was really cheap to buy a second hand copy. Well worth having.


knash88 in reply to Tassa

Thank you Tassa for the suggestion. I will look into it

Thanks Tassa,

I also have had Sjogrens for over 10 years. I also have a dry cough and breathing problems. Will check out the Sneaky Arthritis. My GP says I have quite a wheeze trying Simbicort 200 inhaler for asthma not sure if it is helping. However ventolin does help a bit. Will consider a chest specialist next.

You may also like...