Lupus lung?

So i went yo see the respitory specialist yesturday as i keep taking deep snorting breaths that really hurt. I have trouble sleeping because of back pain an find it hard to get around as i get out of breath! Althou my rhumy has said my lupus isnt active how can it attack my lung? Or have they just fobbed me off with sumthing they can blane lupus on? The pain is getting worse an all my specualist gave me to try was pregablin i mean what the hell is it? Anybody anywer have the same problem? Feel like a hypocondriac! :-(

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  • Have you had pleurisy in the past? Last year I was diagnosed with Lupus, as well as affecting my muscles and joints I developed pleurisy which the hospital didn't notice, it was only when I got home and found I could not get upstairs because I was so breathless. Fifteen months on I still get short of breath, continue to have pain front and back of chest/ribcage, I am unable to sneeze or yawn properly without pain. The Rheumy says I'm anxious which is causing the shortness of breath so I asked him how would he feel if he felt like I did he agreed he to would be anxious. Lupus can cause scarring of the lung which can cause difficulty in breathing. Have you had a lung function test? Mine showed some difficulty with gas transfer which indicates the lining (pleura ) is thickened. I am waiting for a respiratory appt, like you I want to get an understanding of what is going on.

  • Hello lovely yes, i took myself to AnE an refused to move even though i was "wasting there time" id been to doctors everyday and they kept giving me amoxycillin and sayin good old "viral" well the pain got worse so against the out of hours womens advice who said it was prob a chest infection and id be wasting a n e time! They gound i had pneumonia (not bacterial) but the fluid on the lungs ! An was relieved as sometimes everyone rolls there eyes at you and says what now! Im glad im being listened to ! And although im not glad of ypur pain its a relief to see others go thrpugh it and im not alone ! Yes i had the lung function tests but as usual when i went he couldnt find my results.. This happens to me A LOT!


  • Had similar issues last 6 months, gradually getting worse,my Renal const is sending me for a full CT body scan as worried about high blood pressure as well (that could be due to poor kidney function and steroids) but wants to rule things out , he is very thorough it has to be said, and always takes on board everything l tell him, rather than just saying "Oh that will be the Lupus". So going for scan next month and see if we learn anything from that ? My Rheumy is a complete waste of time ! so am being referred to another one by my Renal const as he's not happy. Why is it one const can be so helpful and knowledgeable about Lupus and yet others don't seem to care ?Keep pushing for answers - it's the only way to get anywhere, Good Luck and stay positive. :)

  • Hi Danie

    I had exactly the same problems before I was diagnosed with Lupus 17 years ago. I had extreme chest and back pain. GP thought it was pleurisy and I had several courses of antibiotics. When I was eventually diagnosed with Lupus I was told that the lining of my lungs(pleura) had been damaged by Lupus. The pain eased with steroids but it took a long time and when I get a flare I often have the pleura pain. I think it is not uncommon in Lupus sufferers. I feel for you....coughing, sneezing, yawning can be so painful. Take care

  • Thank you all for your replies its really reassuring that im not going mad :-) uyes coughing sneezing yawning and deep breaths are just so painful hopefully it will go one day just got to keep my chin up snd head held high :-) much love cxx

  • Hi i suffer chronic upper back pain which is actually my lungs. Ive had pleursy and fluid around lungs and heart in past. Now have chronic breathlessness, i hav regular pulmonary funtion tests etc so yes lupus definately attacks lungs!

  • Before being diagnosed with lupus in 2009, I had similar experience...after spending months going to the gp with complaint and finally ending up in a&e I was told it was lupus pericarditis which is inflammation on the lining of the heart...I still get some pain but the steroids tablet helps, however during flare ups it can be a bit painful but nothing compare to the pain I had in 2009. Keep pushing for a better result and fingers crossed you'll get the help you need.

  • Hi, i,m having similar problems. I,m waiting for a respiratory appointment to and a breathing analysis appointment. Had a chest xray but came back normal. I have been coughing on and off for a yr and half and bringing up lots of mucus. I told rheumatologist and he didn't do anything. Went to my gp in end and she has taken it more seriously. I had a very sharp pain which sounds like the pleurisy type pain but i only had it for one night. Does anyone know if pluerisy can come and go like that? The coughing is getting me down as i,m extra tierd and am really struggling with my day at the moment. The wait for tests is horrid isnt it! I just want to know whats the matter with my lungs. I worry that i shouldnt leave it to long in case things get worse but feel i cant be pushy and make a fuss so i just wait and hope they will do something, the drs, its sooo frustrating isnt it! pulled my back yesterday coughing and am in a lot of pain today. I seem to get a lot of period like pain to but don't have periods because have coil. Always have bad lower stomach though.does anyone else get this problem?

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