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DiscussionNo cause found for persistent pleural effusions
Lung Health | Last Active: 3 days ago | Replies (31)Comment receiving replies
Replies to "Sorry you're going through this. Our circumstances seem different, but yes I had some significant pain..."
Hello, I’m experiencing almost the exact situation you described. I’ve had a recurrent pleural effusion of the left lung since October 2024, and despite extensive testing, there’s still no clear cause.
I’ve had about nine thoracentesis in total, with 1.5 - 2 liters being drained each time. drainage through the PleurX catheter after the procedure was under 400 mls only lasted a week because then fluid stopped. I had another drainage after the pleurodisis procedure and that was about 450 mls. And it came back and its about the same
• I’ve undergone multiple X-rays, CT scans, ultrasounds, and every lab test my doctors can think of and for autoimmune conditions.
• The fluid has been tested many times, and confirmed no malignancy found.
• Every result continues to come back negative.
I’ve also seen a wide range of specialists thoracic surgeons, pulmonologists, interventional pulmonologists, hematologists, cardiologists, and others.
In July 2025, I had a pleurodesis, a pleuroscopy, and a PleurX catheter placed. The biopsy showed only inflammation and no malignancy. After a week of home drainage with a home health nurse, the fluid stopped, so the catheter was removed. an ultrasound and X-ray showed pockets of fluid. The procedure was only about 70 % successful if we drain the large pocket, the fluid returns.
I been told there is nothing else to do, no other options that are worth the risk since I have no symptoms.
After the procedure I do have pain/discomfort under my breast where the lung is. I was told it can take months to go away( did you experience that)
My doctors now say we can simply monitor the pockets, since I have no symptoms (no shortness of breath, breathing is fine). Still, I’d like to know why this is happening and whether there’s anything to prevent the fluid.
I have a rheumatology appointment next month to explore possible autoimmune causes and treatments.
I realize you haven’t been active here in over a year, but I truly hope you might see this and respond. Did you ever find the reason for your effusion? And if not, did the lupus treatment you tried despite not having lupus help in any way?
I’d really appreciate any insight. This has been a long, frustrating journey, and I’m hoping to compare experiences.
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Thanks for responding and the info. Rob, it helps. I don’t think my BP drops, haven’t checked it, but that could account for why I feel exhausted after we draw. I’m thinking we are only getting about half the fluid off before the pain starts. My breathing is not good but doesn’t seem to improve or worsen after we draw. Looks like we will just have to live with this for the time being and will continue to stop the draw when the pain starts. I’m still undecided about pleurodesis. Hoping to see a thoracic surgeon when we return home next month to further discuss pleurodesis. What color is the fluid when you draw and has the color changed? Mine is dark bloody color and remained consistent, except for when I had radiation on the left lung, and then it turned several shades darker. It has since returned to the previous color. Man, this stuff has sure been a life changer. I even gave up my motorcycle and haven’t been in a bar fight for almost 2 years LOL..Thanks again, take care of yourself.. Dutch