Lupus affecting the lungs

Lupus has affected my left lung. The prednisone has helped with all my body aches and joint pain which is wonderful for the first time in 7 years I don't have muscle pain. Except my lung. Taking a deep breath I can feel pain in my lung. My doctors have told me to give it time as I have been in a huge flare. I have had x-rays there is no fluid. I do have a dry spot at the end of my lung.

This does concern me that my lung has been affected. I have done a pretty good job of dealing with all this new information without totally freaking out.

I was wondering if anyone else has experienced this???

I too now have lung issues, the only difference is that I now have to have a double lung transplant and it has gotten progressively worse. I too am on Prednisone and 25 other meds. My scarring was caused by a new disease MCTD. At first it was due to imflammation, as I was pregnant the year before and wasnt on any meds. Now the scarring is caused by fibrosis, a totally different process. Im now on o2 and will be meeting with the transplant people in 2months. I hope your dr finds a solution thats works out for you. Good luck.

The first time I was diagnosed with Lupus was after I ended up in the emergency unable to breath. I actually stopped breathing and if the respiratory therapist had not been in the room with a bipap I would be dead. I spent three weeks in intensive care with ivs of lasex and steroids. They did a lung puncture and said that my lungs were filled with fiber. I drained badly for days from the punctured lung. It was then that they told me I had Lupus. That was almost five years ago and I have been pretty good since. My breathing feels tight occasionally but it doesn't last. I get periodic Xrays and my lungs have been clear. So there is no need to freak out. You should go back to normal and move on to new and "wonderful" surprises.

Before I diagnosed with lupus, I had such short of breathe I could not lay down. I thought it was because I am overweight and a former smoker so I didn't go to the doctor for a few weeks. When I did my doctor sent me right down to get blood work, chest x-ray and a cat scan. They found that the sack around my heart was filled with fluid (the most the doctor had ever seen), so to the ICU I went. the next day, they drained the fluid and a few days later I was home with the doctor's telling me that I must have hit my chest to cause it because there was blood in the fluid they had removed. I think I would have remembered a hit like that!! They said I should not be bothered with it again. Well, 4 weeks later it happened again. So they put a chest tube in this time (not a fun thing) to drain the fluid and put a small "window" (cut away a piece of the actual sack) in. After a week I was home again with the doctors telling me I would not have any problem again because any fluid that came into the sack would flow out through the "window". Again, after a few weeks, I was taken to the hospital during the night because I couldn't breath and was vomiting. Now they found the fluid in my lung. Another chest tube (went in the same spot as the last time) to drain the fluid. After a 4th time, they decided there was something ongoing going on and so after a zillion tests and 14 vials of blood (just tat time), they sent me to a rhemy to see what was going on. I still am sore fro the 2 chest tubes which go in between muscles to get to the spot they want. Even though I was told it would only be sore for a few weeks, it still is sore and sometimes hurts to breathe deep after 6 months. I am being told that it is because of having 2 chest tubes and just be patient. If you start having trouble breathing or vomiting, get to the ER if you can't get to your own doctor. Sorry I took so long to get to your answer, but I wanted to let you know what is possible to happen. Please don't wait as long as I did. You know it is bad when the call your family in.

Good luck to you and keep us abreast of your progress.

Lupus is also affecting my lungs. I have had an EKG and chest X-ray today for Pneumonia or Pleurisy. Good Luck to you.

They found out I had pleurisy of the lungs from a pulmonary test. My doc was actually surprised to see that as he didnt think they would find anything. He only did the test as he saw I had a hard time breathing anytime I laid down. They have done so many CTs MRIs and it doesnt show anything. I struggle to get my breath often and have to take several breaks just to get to the kitchen or upstairs to bed. If i want to go out shopping or enjoy a day out with friends I have to use a wheel chair for by the time I am done I am completely wiped out. Before they figured out what was going on I thought I was just really out shape.....

Hi! hope that you feel better...Beverly L.

Thank you all so much for sharing your stories !! I am sorry you all are dealing with this and it helps to know I am not alone.

I wish you all a very happy day !

Hi Flower,

Unfortunately for me as with most of the other posters. I have had issues with my lungs. I've had pleurisy, pneumonia and more CT Scans than I can count. I have the shadowy x-rays with "infiltrates". I also have an excellent pulmonologist who works well with my rheumy. I keep my inhaler nearby. I have found that gastric symptoms can also affect my breathing so any nutrional adjustments you can make will be helpful.

after almost 20 years of smoking, I stopped after a pneumonia hospitalization. I guess every one will have a different experience with this. Just listen to your docs and your body.


I also have lung issue I was in the hospital 8 times in one year. Pleurisy was like a horrible family member that would not go away. I am now trying to stop smoking and start taking better care of me. Like Flower a great pulmonologist with an understanding of lupus can really help.


When I had my first bout of pneumonia, I ended up on a respirator. The doctor said something to the effect of "she's gone through this a lot, hasn't she?". The problem is I hadn't. However, my lungs are severely scarred which gave me a diagnosis of COPD.

Although I quit smoking after the 3rd hospital stay which definitely helped, I am VERY careful around anyone with a cold or flu. I can always tell when it's acting up and it DOES hurt. The good news is, like with a flare it comes and goes. This too shall pass.

Feel better soon,


I have a lot of breathing problems also, I have had many cat scans over the years and they never see any fluid. Does this mean I could still have pluerisi on and off but when they take the scan it isn't showing? If I use my chest muscle or vacuum or jump it triggers a feeling of heaviness in my chest and it starts feeling like I am swelling inside then I am very ourt of breath. This feeling comes about 12 hrs after I did the activity. Antinflamatories help and sometimes I need prdnisone to take it away. I wish I knew exactly what it is, but no definitive answers. It sounds like plurisi to me?

My wife has lung issues from lupus and is on 3 LPM of 02 continuosly.

I am experiencing Lung and Heart issues. Sleeping in the recliner myself tonight. It's so bad, I can't stand to lay down. It has been nice to read all of your experiences with this. Thanks for the encouragement that this will pass. Sometimes these things we experience are so painful, we feel like they will never pass. Love all the support on here.

I’ve been sleeping with oxygen since 2001,The lupus is after my heart and lungs.

You might want to check out sarcoidosis...another autoimmune disease. Which can affect one's lungs...looks like TB or spot on lungs.

Thank you I will talk to my dr. about Sarcoidosis.

Dear Flower, I too have lung problems. In the past I had pleurisy . Now, many years later we, meaning the Doctors have not determined what it is. I have nodules in my lower right lung. The Pulmonalogist said I had Valley Fever, after doing a bronchoscopy , not a pleasant test. I was then sent to my Infectious Disease Dr., and he said there was some contradictions with the lab results, and does not believe I have Valley Fever. I have never had any period of remission? I have been on Prednisone ,Plaquinal, and Imuran, for 12 years, and I wonder what this long term medications are doing to my body. Have any of you been on these medications long term?