No cause found for persistent pleural effusions

Posted by cindyconstien @cindyconstien, Dec 24, 2018

I have been treated for 2 years for pleural effusions. All fluid and blood work comes back clean – no cancer, infection, virus – nothing. They had been tapping both lungs and getting 1.5 to 2 liters from each side. The heart has been checked out (EKGs, Echos, stress tests) and there are no issues.
In April I had a bi lateral pleurodesis performed with biopsies from my left lung (no issues). They used talc and 7 months later I just had 1.8 liters drawn from the right lung. They believe the left side was moderately successful but the right side failed. I'm about to schedule a redo on the right, perhaps using the chemical option. I am also looking at possible "constrictive pericarditis" and will get another echo today, possibly leading to a heart cath to look closer.
I am a non smoker, relatively fit. I ran marathons and triathlons, ate appropriately, non diabetic. Only medication is for cholesterol management and inhalers to try to relieve my breathing discomfort.
I'd like to treat the cause – not the symptoms.

Any ideas?
Rob C.

Interested in more discussions like this? Go to the Lung Health group.

Good morning. Since I last posted I had a pleurodeses with talc on the right lung May 2019. Initially it really helped, I was exercising and walking. But then I started to develop lymphedema, focused from abdomen to feet. Always wondered where the fluid in my lungs came from and had asked if you block off the reservoir where will it go. I saw 2 more cardiologists, one a pericarditis specialist, cardiac MRI and lots of other tests. I have small pericardium issues not enough to pursue. Saw a hematologist/oncologist, full PET, nothing. ENT has scoped me twice. Many CAT and X-Rays. Started seeing a Rheumatologist in June, had seen one in 2017 but he didn't think enough issues to pursue. New one in July felt I had some auto immune issues. Lots of tests and follow-ups' she started me on hydroxychloroquine and azathioprine and I started to breath better. She is treating me as though I have Lupus. Pulmonologist has said there is nothing else she can do. My breathing function tests and O2 is good. Several small localized effusions are not worth attempting to drain. Also saw Vascular med in October. He did ultrasounds on abdomen, legs and feet – I baffled him. His suggestions were manual lymph massage, lasics and support hose – keep legs up and walk a little every day. I started seeing a massage therapist who is trained in lymphatic drainage – she worked miracles. Exercising better walking further. Have had trouble recently getting refills for hydroxy. I started prednisone after surgery but went off it, that's when I felt I was backsliding. Went back on in the summer but dropped down to 5mg. Have tried twice to go off and every time I deteriorate and have to go back on. I'm operating at about 70% which is a great improvement. Difficult to breath in cold, hot or humid weather. Low energy. Staying inside all the time diminishes exercise opportunities. Feet especially swell and are uncomfortable to walk on but can be done.

Rob Constien

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@cindyconstien

Good morning. Since I last posted I had a pleurodeses with talc on the right lung May 2019. Initially it really helped, I was exercising and walking. But then I started to develop lymphedema, focused from abdomen to feet. Always wondered where the fluid in my lungs came from and had asked if you block off the reservoir where will it go. I saw 2 more cardiologists, one a pericarditis specialist, cardiac MRI and lots of other tests. I have small pericardium issues not enough to pursue. Saw a hematologist/oncologist, full PET, nothing. ENT has scoped me twice. Many CAT and X-Rays. Started seeing a Rheumatologist in June, had seen one in 2017 but he didn't think enough issues to pursue. New one in July felt I had some auto immune issues. Lots of tests and follow-ups' she started me on hydroxychloroquine and azathioprine and I started to breath better. She is treating me as though I have Lupus. Pulmonologist has said there is nothing else she can do. My breathing function tests and O2 is good. Several small localized effusions are not worth attempting to drain. Also saw Vascular med in October. He did ultrasounds on abdomen, legs and feet – I baffled him. His suggestions were manual lymph massage, lasics and support hose – keep legs up and walk a little every day. I started seeing a massage therapist who is trained in lymphatic drainage – she worked miracles. Exercising better walking further. Have had trouble recently getting refills for hydroxy. I started prednisone after surgery but went off it, that's when I felt I was backsliding. Went back on in the summer but dropped down to 5mg. Have tried twice to go off and every time I deteriorate and have to go back on. I'm operating at about 70% which is a great improvement. Difficult to breath in cold, hot or humid weather. Low energy. Staying inside all the time diminishes exercise opportunities. Feet especially swell and are uncomfortable to walk on but can be done.

Rob Constien

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@cindyconstien Rob, good to hear from you with the update. Congrats on getting back to 70% That’s a big improvement. But I can understand your desire for further improvement. This pandemic restrictions do put a limit to exercise opportunities. Did you see the Virtual Walking Support Group here on Connect? https://connect.mayoclinic.org/discussion/lets-go-walking-join-me-for-a-virtual-walking-support-group/

Members report their walking accomplishments and exercise alternatives. Many people have posted good YouTube videos of exercise alternatives when confined to home. It also helps to motivate when talking with others.

With the stay home rules have you been able to continue with the lymphedema massage appointments?

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@cindyconstien

Good morning. Since I last posted I had a pleurodeses with talc on the right lung May 2019. Initially it really helped, I was exercising and walking. But then I started to develop lymphedema, focused from abdomen to feet. Always wondered where the fluid in my lungs came from and had asked if you block off the reservoir where will it go. I saw 2 more cardiologists, one a pericarditis specialist, cardiac MRI and lots of other tests. I have small pericardium issues not enough to pursue. Saw a hematologist/oncologist, full PET, nothing. ENT has scoped me twice. Many CAT and X-Rays. Started seeing a Rheumatologist in June, had seen one in 2017 but he didn't think enough issues to pursue. New one in July felt I had some auto immune issues. Lots of tests and follow-ups' she started me on hydroxychloroquine and azathioprine and I started to breath better. She is treating me as though I have Lupus. Pulmonologist has said there is nothing else she can do. My breathing function tests and O2 is good. Several small localized effusions are not worth attempting to drain. Also saw Vascular med in October. He did ultrasounds on abdomen, legs and feet – I baffled him. His suggestions were manual lymph massage, lasics and support hose – keep legs up and walk a little every day. I started seeing a massage therapist who is trained in lymphatic drainage – she worked miracles. Exercising better walking further. Have had trouble recently getting refills for hydroxy. I started prednisone after surgery but went off it, that's when I felt I was backsliding. Went back on in the summer but dropped down to 5mg. Have tried twice to go off and every time I deteriorate and have to go back on. I'm operating at about 70% which is a great improvement. Difficult to breath in cold, hot or humid weather. Low energy. Staying inside all the time diminishes exercise opportunities. Feet especially swell and are uncomfortable to walk on but can be done.

Rob Constien

Jump to this post

Hi Rob,
You’ve had quite the ordeal. Until I read your posts tonight I thought my situation was unique. Now I think I may just be at the start of a long race that you’re very familiar with: how to end chronic pleural effusions.

My experience with this began after open heart surgery at Mayo in May where I had my aortic and mitral valves replaced and my tricuspid repaired. It was a rough surgery. I had my first thoracentesis a few days after the surgery. At that point I was so generally miserable that I was unaware of any particular difficulty breathing — I was having difficulty just living. After discharge from Mayo (13 days later), I went home where my condition continued to deteriorate. Four days of freedom, and then a rush to the local emergency room where I was admitted for 9 days while they worked on dealing with my fluid overload – including a second thoracentesis that removed 1.6 liters.

Once discharged I went about the business of ever-so-slowly regaining the ability to care for myself. As I advanced from using a walker to being able to drive, I began cardiac rehab. I wasn’t getting stronger and, while breathing was easier, it still wasn’t good. Long story short, I had a third thoracentesis in early August. I was briefly better; for example I was able to climb the stairs from lower to upper level while stopping only once to catch my breath. I had high hopes that today’s chest xray would reveal the absence of pleural effusion. I had hope even though the last two days had found me struggling with breathing. Well, my hope was in vain. Yet again there’s fluid. Right lung. Just like before. No clear cause. My pulmonologist is tentatively recommending colchicine to treat the inflammation and no thoracentesis. She wants to consult with my Mayo and local cardiologists before finalizing this as a treatment plan.

After reading about your experience, I’m feeling pretty hopeless that this fluid war will be over anytime soon. At this point, I’m worse off than before the surgery. I hate to think that the misery I’ve endured for almost 4 months is simply the beginning of the downhill slide of the rest of my life.

I sincerely hope things improve for you soon.

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This is a long shot but just in case it might help: I had frequent pleural effusions, almost monthly thoracenteses, and then was diagnosed with Lupus. I was treated with mycophenolate (the only Lupus drug I could tolerate) and did not have another accumulation for several years. In the interim I moved from UCLA in L.A. to Charlotte NC. My rheumatologist here took me off the mycophenolate and tried alternatives that I couldn't stomach. I have been without Lupus treatment since and the fluid has definitely returned to my lungs. I was hospitalized for 5 days for cellulitis and they planned to do a thoracentesis while I was there but after 5 days of Lasix they felt there wasn't enough fluid remaining to safely perform the procedure. I can't see the new rheumatologist until the end of October but I'm hoping resuming mycophenolate will help. I did have several years with no evidence of fluid accumlation while I was taking it before. My case is complicated by Emphysema and heart disease but am tossing you Lupus as a possible cause that the Docs haven't yet considered. I'm certainly hoping that getting back on the mycophenolate will help me! Maybe it could help you too? Margaret

REPLY
@inali

Hi Rob,
You’ve had quite the ordeal. Until I read your posts tonight I thought my situation was unique. Now I think I may just be at the start of a long race that you’re very familiar with: how to end chronic pleural effusions.

My experience with this began after open heart surgery at Mayo in May where I had my aortic and mitral valves replaced and my tricuspid repaired. It was a rough surgery. I had my first thoracentesis a few days after the surgery. At that point I was so generally miserable that I was unaware of any particular difficulty breathing — I was having difficulty just living. After discharge from Mayo (13 days later), I went home where my condition continued to deteriorate. Four days of freedom, and then a rush to the local emergency room where I was admitted for 9 days while they worked on dealing with my fluid overload – including a second thoracentesis that removed 1.6 liters.

Once discharged I went about the business of ever-so-slowly regaining the ability to care for myself. As I advanced from using a walker to being able to drive, I began cardiac rehab. I wasn’t getting stronger and, while breathing was easier, it still wasn’t good. Long story short, I had a third thoracentesis in early August. I was briefly better; for example I was able to climb the stairs from lower to upper level while stopping only once to catch my breath. I had high hopes that today’s chest xray would reveal the absence of pleural effusion. I had hope even though the last two days had found me struggling with breathing. Well, my hope was in vain. Yet again there’s fluid. Right lung. Just like before. No clear cause. My pulmonologist is tentatively recommending colchicine to treat the inflammation and no thoracentesis. She wants to consult with my Mayo and local cardiologists before finalizing this as a treatment plan.

After reading about your experience, I’m feeling pretty hopeless that this fluid war will be over anytime soon. At this point, I’m worse off than before the surgery. I hate to think that the misery I’ve endured for almost 4 months is simply the beginning of the downhill slide of the rest of my life.

I sincerely hope things improve for you soon.

Jump to this post

It is all so discouraging, but I am feeling better. I believe the Lupus treatment is working. The lymphedema is improving, as long as I take lasics, wear support hose and keep my feet up. I can do some outside work in moderate amounts, to much and the legs swell again. Breathing is ok as long as I don't push to hard and the humidity is low. Stairs and hills are problematic. The last blood work shows the Lupus markers are almost negligible. All other blood work and tests are unable to point to a cause.

Hang in there. Rob C.

REPLY
@mlhanes

This is a long shot but just in case it might help: I had frequent pleural effusions, almost monthly thoracenteses, and then was diagnosed with Lupus. I was treated with mycophenolate (the only Lupus drug I could tolerate) and did not have another accumulation for several years. In the interim I moved from UCLA in L.A. to Charlotte NC. My rheumatologist here took me off the mycophenolate and tried alternatives that I couldn't stomach. I have been without Lupus treatment since and the fluid has definitely returned to my lungs. I was hospitalized for 5 days for cellulitis and they planned to do a thoracentesis while I was there but after 5 days of Lasix they felt there wasn't enough fluid remaining to safely perform the procedure. I can't see the new rheumatologist until the end of October but I'm hoping resuming mycophenolate will help. I did have several years with no evidence of fluid accumlation while I was taking it before. My case is complicated by Emphysema and heart disease but am tossing you Lupus as a possible cause that the Docs haven't yet considered. I'm certainly hoping that getting back on the mycophenolate will help me! Maybe it could help you too? Margaret

Jump to this post

Thanks for sharing this info about the relationship between Lupus and pleural effusion. I will definitely bring this up with my new internist when I see her in early October. I looked up Lupus on the Mayo web site and was surprised to learn that I actually have many of the symptoms. Not that I’d be happy to learn that I have another chronic condition, but it is always a bit of a relief to learn the underlying cause of recurring problems and that there may be treatment to help you feel better. Thanks so much!

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@cindyconstien

It is all so discouraging, but I am feeling better. I believe the Lupus treatment is working. The lymphedema is improving, as long as I take lasics, wear support hose and keep my feet up. I can do some outside work in moderate amounts, to much and the legs swell again. Breathing is ok as long as I don't push to hard and the humidity is low. Stairs and hills are problematic. The last blood work shows the Lupus markers are almost negligible. All other blood work and tests are unable to point to a cause.

Hang in there. Rob C.

Jump to this post

Even if you don’t actually have Lupus, if treating you as if you do helps, that’s a good thing. I’m sorry to hear that you’re having difficulty getting the medication. I imagine some of that is due to it’s use on Covid patients. However, I use eye drops for my glaucoma that have become impossible to find over the last few months. I’m sure that particular medication is not in short supply due to the pandemic. More likely it’s because the manufacturer has decided that it’s not profitable enough.

I hope you continue to improve. Please post updates as you proceed on your health care journey.

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@inali

Thanks for sharing this info about the relationship between Lupus and pleural effusion. I will definitely bring this up with my new internist when I see her in early October. I looked up Lupus on the Mayo web site and was surprised to learn that I actually have many of the symptoms. Not that I’d be happy to learn that I have another chronic condition, but it is always a bit of a relief to learn the underlying cause of recurring problems and that there may be treatment to help you feel better. Thanks so much!

Jump to this post

@inali– Good morning. Autoimmune diseases can all look alike in blood work, and with symptoms. There are so many autoimmune diseases that it's sometimes impossible to determine which one it is. Has a specialist been recommended to you for autoimmune disease?

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Yes – a Rheumatologist at Clev Clinic

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Hi ya’ll, so relieved I found this group. My last PET scan in early Nov 2020 showed I was cancer free now after stage IV NSCLC and other tumors. Since my lung cancer diagnosis, Jun 2019, I have had chronic fluid on my right lung. The fluid was tested with the first needle draw, 1,700cc, and found no infection. After 6 needle draws they inserted a catheter in the right lung. My wife is a retired RN so we drain the lung at home every 3rd day per the Dr recommendation. The fluid color has gotten darker, close to black coffee color, and the amount of fluid has remained consistent for the past 10 months at about 500cc. We’re going on a year dealing with this and still no relief in sight. Every Dr, oncologist, we have seen gives us the same “I don’t know what’s causing it” answer and mentions the talc treatment. I have an appointment with a thoracic Dr on 23 Feb, next Tue., and hoping they can provide some answers and recommend treatments. The questions raised in this group are identical to mine and from what I’m reading the talc treatment is not very successful. I really appreciate the honesty here and any suggestions would be greatly welcomed. I don’t feel so alone now, thank you..

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I have some questions and am hoping someone can shed some light on them.. When we drain my lung every 3 days we get about the same amount, 500cc. Just prior to reaching 500cc I experience sharp grabbing pains in the lung and have to cough. If I let the drain continue the pain increases but the fluid flow does not decrease. When they were taking the fluid off with a needle they stopped when I told them I felt the grabbing pains. So, we shut the catheter off now when the pain starts? Is the grabbing pain normal ? What causes the pain ? Am I supposed to continue draining until the lung is completely drained ? What are you doing if you have this problem? Would appreciate any input.. Dutch

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Sorry you're going through this. Our circumstances seem different, but yes I had some significant pain on occasion. They would take +/- 2 liters at a time from either lung, but a couple times I got a very sharp painful stab at the tap location. They decided not to draw down the fluid so much. Once my BP dropped so low they rushed me into the ER. They began to lower my head as soon as the tap was done to prevent the BP drop. The pleurodesis (talc) seems to have worked, breathing is better but not great. Last CT shows that the pockets of remaining fluid are holding steady or reducing. Good luck.

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