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Has anyone experienced recurrent pleural effusion with no clear cause
I’m a 47-year-old female and have been experiencing repeated pleural effusions on my left lung for over a year. The fluid has been tested numerous times and all results have come back negative. I’ve seen multiple specialists; thoracic surgeons, pulmonologists, and pulmonology interventionists but we still don’t have answers.
Before my recent procedure, I underwent seven thoracenteses to drain the fluid. Two months ago, I had a pleurodesis with pleuroscopy and a PleurX catheter placed. The procedure helped only about 70%, and I’m now left with three pockets of fluid. The biopsy showed only inflammation but no malignancy. My doctors have said there’s nothing more they can do, yet I still have no diagnosis. For now we just monitor the fluid.
I’d love to connect with anyone who’s experienced something similar.
I really appreciate it
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hi @pleuralmystery - I'm so sorry you've been experiencing recurrent pleural effusions. I haven't personally had one, but my mother had several when she had lymphoma. It looks like the top cause is heart failure. What has your doctor(s) said?
https://www.merckmanuals.com/home/lung-and-airway-disorders/pleural-and-mediastinal-disorders/pleural-effusion
Thank you so much for your kind words. I’m sorry your mom went through that it must have been tough for both of you. In my case, they’ve ruled out heart failure, cancer, lymphoma, and any autoimmune causes. At this point, the doctors don’t know the reason for the effusions, so there are no further tests planned. For now, they’ve advised me to just monitor the fluid pockets.
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1 ReactionIt's great that they've ruled out cancer and heart failure. But I'm sure it's frustrating to not have a diagnosis or understand why it keeps happening. What about autoimmune diseases like rheumatoid arthritis? Thoracic endometriosis can also cause pleural effusions in women, but it's usually in sync with your monthly cycle. I would figure out if another (type of) doctor could help further. You deserve better answers.
Thank you for your reply. As I mentioned, they’ve ruled out all the common autoimmune diseases rheumatoid arthritis, thyroid issues, lupus as well as lymphoma and cancer. My heart is fine, and they’ve checked everything gynecological, including my ovaries; no endometriosis or anything like that. I’ve seen a wide range of doctors and specialists: pulmonologists, thoracic surgeons, hematologists, cardiologists, rheumatologists, neurologists many of them more than once. I don’t just get a second opinion; I get three, four, even five opinions. I’ve been battling this for a full year now, and even the biopsy didn’t reveal anything. And yes its frustrating
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1 Reaction@pleuralmystery have they checked your spleen? this article says left sided pleural effusions are unlikely to result from a systemic issue (most of which your team has also ruled out.)
https://www.atsjournals.org/doi/abs/10.1164/ajrccm-conference.2023.207.1_MeetingAbstracts.A3359
@mamajite ive had CT scans of the abdomen, pelvic and no issues with the spleen.
Thank you
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1 ReactionI've been going through this all summer with multiple thoracentises. All biopsies proved negative. They've decided that it's related to heart failure and offered me a PleurX catheter or to handle it medically. I opted for medical intervention and they now have me on lasix. Since I started the lasix at 80 mg/day I haven't had any more effusions.
What heart tests have they done on you?
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2 Reactions@denzie
Mine isn’t due to heart failure. I’ve had an echo, a stress test, an EKG, and extensive blood work anything related to the heart and all of it was normal. I’ve seen three cardiologists, and heart failure has been completely ruled out.
At this point, there’s still no clear reason for the fluid. I did have a pleurodesis, which only was 70% successful but I still have pockets of fluid. For now, it’s just a matter of monitoring them, because even if I undergo another thoracentesis to have the fluid drained from the pockehs, it will just return.
Until I find the underlying cause, I plan to see another rheumatologist and ask about trying a treatment approach as if I had an autoimmune issue something like rheumatoid arthritis to see if that helps. But so far, no one is willing to start any treatment or prescribe medication.