Bronchiolitis Obliterans with Organizing Pneumonia (BOOP)

Posted by oakbourne @oakbourne, Aug 19, 2019

I’ve had life-long silent Celiac Disease and didn’t know it. Bloated stomach and Brain Fog. Internal shakiness and fatigue. Then I was diagnosed with Microscopic Colitis, (MC). Okay! Then I was diagnosed with BOOP Pneumonia. It’s Idiopathic or doctors don’t know what causes BOOP. My lungs were filled with inflammation. The doctor did an X-ray and biopsy of my lungs and I witnessed my lungs were pure White, INFLAMMATION!!! I found out that Gut and Lung tissue are similar or the same. You can die from BOOP PNEUMONIA. I was lucky! I survived BOOP. I was prescribed Prednisone long term. HORRORS! I did research and ordered the book – “BOOP: You’re The Boss”. You can cure BOOP with Macrolides – clarithromycin and azithromycin, and bypass the deadly steroids. I informed my pulmonogist and that’s what he uses now. I think life-long silent Celiac Disease and Microscopic Colitis caused BOOP PNEUMONIA. I know MC is an autoimmune disorder where your gut is inflamed and irritated. The inflammation has to go somewhere, so it goes to the lungs. That’s my humble opinion and two cents worth. Don’t play around with BOOP PNEUMONIA!

@oakbourne have you seen the information on Lung.org?

Bronchiolitis Obliterans with Organizing Pneumonia (BOOP)
https://www.lung.org/lung-health-and-diseases/lung-disease-lookup/boop/

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@oakbourne

No, I have not seen the information on Lung.org. Dorothy

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@oakbourne, I have added this discussion that you started about bronchiolitis obliterans with organizing pneumonia (BOOP) to the Lung group as well. There are several discussions about BOOP, also called Cryptogenic Organizing Pneumonia (COP), in the Lung Health group that you may wish to join.

– Bronchiolitis Obliterans with Organizing Pneumonia (BOOP) https://connect.mayoclinic.org/discussion/boop-pneumonia/
– Cryptogenic Organized Pneumonia (COP) https://connect.mayoclinic.org/discussion/cop-1/
– Obliterative Bronchiolitis (OB) v. ILD or CLD??? https://connect.mayoclinic.org/discussion/obliterative-bronchiolitis/

How are you doing? Are the symptoms of BOOP/COP being well managed for you now?

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How long did it take you to find out about BOOP? WHAT BOOK DID YOU GET

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I have COP for a number of months, following 4 other pneumonias. Eosinophilic was the preceding diagnosis.
The treatment has been varying amounts of prednisone (60 mg to 20 mg), I have been as low as 5 mg, but the COP has alway flared back upwards at the low levels. I have no feeling that It will be cured, only managed.
The "other issue" is the resultant suppressed immune system that I deal with allowing mycobacterium of opportunity to gain access to my system.
It's a bit of a struggle, but my pullmonolight gives me confidence.
I used clarithromycin and vioxx for the resultant cholea with almost deadly results (I was told it was the clarithromycin that caused me the "reaction.".
Good luck,
John

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Who told you what gave you BOOP? I JUST found out that I have it and my lungs are the worst and I can not even walk to bathroom without air and about to die and on 20 leaders of air. I am requiring a lot of oxygen. I had this in 2016 but they said it was diagnosed wrong.I feel the lung transplant is the only way to go and its a lot but I am willing to work to breath again. I can't even go outside on porch

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@kp5450121

Who told you what gave you BOOP? I JUST found out that I have it and my lungs are the worst and I can not even walk to bathroom without air and about to die and on 20 leaders of air. I am requiring a lot of oxygen. I had this in 2016 but they said it was diagnosed wrong.I feel the lung transplant is the only way to go and its a lot but I am willing to work to breath again. I can't even go outside on porch

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Hi, I don't know what to say. Have you been to a pulmonologist that said you have Boop Pneumonia? My Boop was confirmed by a lung biopsy. I was sick, having a hard time breathing and a deep dry cough. I think there are two kinds of Boop. Right now they don't know what causes Boop. I have inflammation in my Gut and I think since our Gut and lung tissue is the same, there is a connection. You need to be on medication. I think there is the fast dangerous kind of Boop, but mine came on slowly and breathing was difficult. Since you've had it since 2016, you may have the kind I had. First, you need a diagnosis. Please contact me. Dorothy

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@kp5450121

How long did it take you to find out about BOOP? WHAT BOOK DID YOU GET

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My Boop Pneumonia was confirmed by a lung biopsy. The book is "BOOP: YOU'RE THE BOSS." The author is Gary R. Epler, M.D. A great caring doctor.

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@colleenyoung

@oakbourne, I have added this discussion that you started about bronchiolitis obliterans with organizing pneumonia (BOOP) to the Lung group as well. There are several discussions about BOOP, also called Cryptogenic Organizing Pneumonia (COP), in the Lung Health group that you may wish to join.

– Bronchiolitis Obliterans with Organizing Pneumonia (BOOP) https://connect.mayoclinic.org/discussion/boop-pneumonia/
– Cryptogenic Organized Pneumonia (COP) https://connect.mayoclinic.org/discussion/cop-1/
– Obliterative Bronchiolitis (OB) v. ILD or CLD??? https://connect.mayoclinic.org/discussion/obliterative-bronchiolitis/

How are you doing? Are the symptoms of BOOP/COP being well managed for you now?

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I am doing fine. Sometimes I get scared by a deep cough. It can come back. Mine was the slow kind that is usually non-deadly. I think the faster kind of BOOP is more deadly and many die.

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@oakbourne

No, I have not seen the information on Lung.org. Dorothy

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Hi John, how can I help you? Dorothy

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Hi Dorothy @oakbourne, Thanks for the private message. I thought I would answer your message in the discussion you started as your information and questions may be helpful for other members also. You mentioned that doctors should not prescribe prednisone because of possible side effects that it can cause osteoporosis and cataracts. Also, it is like you say difficult to taper off prednisone.

I've been prescribed prednisone twice by my Mayo rheumatologist for 2 separate occurrences of polymyalgia rheumatica (PMR). It was a miracle drug for me as I've heard it was for others. Within hours of taking my first dose the pain was gone and I had immediate relief. I also spent 3-1/2 years tapering off the first time and when it came back 6 years later, I spent another 1-1/2 years tapering off. It is not meant to take for the rest of your life and it can be like you say, hell to taper off and end taking. There were no ordinary antibiotics to my knowledge that can help with PMR.

Here are a couple of references I found on prednisone, osteoporosis and cataracts. I think it's good information but as a patient it does provide you with more reasons to learn as much as you can about any health condition you have and what the available treatments are so that you can have the discussion with your doctor to weigh the risks and benefits for each of the available treatments.

– Glucocorticoid-Induced Osteoporosis and Osteonecrosis: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3417039/
– Cryptogenic organizing pneumonia—Results of treatment with clarithromycin versus corticosteroids—Observational study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5612459/
– Bronchiolitis Obliterans with Organizing Pneumonia (BOOP): https://foundation.chestnet.org/lung-health-a-z/bronchiolitis-obliterans-with-organizing-pneumonia-boop/

Can you share your reference to the book written by a well known lung specialist who stated ordinary antibiotics will cure Boop Pneumonia without steroids?

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@johnbishop

Hi Dorothy @oakbourne, Thanks for the private message. I thought I would answer your message in the discussion you started as your information and questions may be helpful for other members also. You mentioned that doctors should not prescribe prednisone because of possible side effects that it can cause osteoporosis and cataracts. Also, it is like you say difficult to taper off prednisone.

I've been prescribed prednisone twice by my Mayo rheumatologist for 2 separate occurrences of polymyalgia rheumatica (PMR). It was a miracle drug for me as I've heard it was for others. Within hours of taking my first dose the pain was gone and I had immediate relief. I also spent 3-1/2 years tapering off the first time and when it came back 6 years later, I spent another 1-1/2 years tapering off. It is not meant to take for the rest of your life and it can be like you say, hell to taper off and end taking. There were no ordinary antibiotics to my knowledge that can help with PMR.

Here are a couple of references I found on prednisone, osteoporosis and cataracts. I think it's good information but as a patient it does provide you with more reasons to learn as much as you can about any health condition you have and what the available treatments are so that you can have the discussion with your doctor to weigh the risks and benefits for each of the available treatments.

– Glucocorticoid-Induced Osteoporosis and Osteonecrosis: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3417039/
– Cryptogenic organizing pneumonia—Results of treatment with clarithromycin versus corticosteroids—Observational study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5612459/
– Bronchiolitis Obliterans with Organizing Pneumonia (BOOP): https://foundation.chestnet.org/lung-health-a-z/bronchiolitis-obliterans-with-organizing-pneumonia-boop/

Can you share your reference to the book written by a well known lung specialist who stated ordinary antibiotics will cure Boop Pneumonia without steroids?

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John & Oakbourne,
It is often the "best worst choice.
With COP (BOOP) action should be taken. I have been on prednisone for 3/4 years. I'll be on in forever.
I have osteopenia.
Is it a result of the prednisone, possibly. It may be attributable to other issues. The prednisone is as likely to lower your immune system at high doses. Still it is the Only medication that I have taken for COP. My doctor told me that there was another option, but it was effective but offered a more significant side effects.
The question is, is the cure worse that the disease? I doubt it. The COP kill you if not managed.
I have a Reclast shot yearly for the osteopenia.
I haven't heard of a substitute for oxygen.

Good luck, and keep considering the best advice of your medical team.
Don't hesitate to ask questions!!

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