Still short of breath!

I had a VQ scan many years ago when I did, indeed, have PEs (pulmonary oedema) or clots on the lung. Do you have APS? That could obviously cause blood clots. Or it might be inflammation of the lung from Lupus (or I guess even Sjogren's) reducing lung capacity. Have you had spirometry tests?

I too am currently having SOB, fatigue, terrible brain-fog, balance problems etc. and am on low-dose steroids. Not sure yet what's going on: stress-induced Sjogren's flare-up; development of Lupus???? Who knows?! Work in progress.

Keep us updated and good luck. And Don't Panic!

Hi AngelaW, Sorry to here about your difficuly breathing I to have a similiar problem. In Jan 2012 I was diagnosed with Lupus after being ill with flu like symptons for weeks. At that time due to pain in my chest I had difficulty turning in bed and if I attempted to do small tasks I became breathless and felt as if I had been hit across the back with a plank of wood. Chest X-ray showed I had pleurisy which included a pleural effusion and partial collapse of the lower right lung. In March a lung function test showed I had a gas transfer problem which causes the breathing difficulty by reducing the lung capacity. My oxygen levels don't drop very much even when I'm short of breath, I bought an oximeter to monitor my levels, I think the lowest I've been is 95% but it will come up quickly to 98 - 99% Today, nearly 9mths later I still have breathing problems (if I exert to much effort) and generalised pain at the base of lungs and around the chest a recent X-ray shows a very slight improvement . It beggars belief that the chest consultant said he didn't know what was on your CT scan, surely a radiologist would have reported on it. My Rheumie keeps telling me I need a CT scan of lungs and referral to a Chest Physican but he keeps forgetting to arrange them therefore I,ve decided to pay for a private consultation to find out exactly what is on my x-rays and what is the long term outcome. Meanwhile I got some excercises off the internet which help to increase/improve lung capacity and these have helped a little. I do hope you get some answers from your VQ scan. Will be thinking of you.

I have just returned home after a 5 week hospital admittance. I started with

with Shortness of breath and every bit of movement felt like l'd run a marathon. To cut a long story short I had a build up of fluid around my heart and lungs which is called 'pericardal effusion' and i had to have the excess fluid drained from my heart via a tube that was inserted into my chest. Was a scary procedure as I was only under local anaestatic, but i made it through.

Then dialysis was used to drain the build up of fluid in my lungs. However through all this it was thought i had a cheet infection so have also been on a lot of antibiotics. So happy to be home now.