Cryptogenic Organizing Pneumonia (COP): Any success in treating?

Posted by spudmato @spudmato, Jul 26, 2019

Has anyone out there had success with treating COP (cryptogenic organized pneumonia)?

Hi @spudmato, I would like to share this article on cryptogenic organized pneumonia: https://www.mayoclinic.org/diseases-conditions/interstitial-lung-disease/expert-answers/cryptogenic-organizing-pneumonia-cop/faq-20057840

How have you been treated with this so far?

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I have been under treatment for over a year.
The base of my treatment has been prednisone 5 to 60 mgs.
Most recently the dosage has risen from 20 mg to 30 mg. In the past, a reduction has calmed the COP. The last change from 5 mg to 20mg saw a significant flair in the IN ONE LUNG.
My immune system is suppressed from several years of prednisolone, and I have picked up bacteria of opportunity. Micro bacterium. Cholea, etc. A new unknown bacterium is currently being cultured.
I have had some severe negative reaction to one of the anti biotics.
Not much fun at this time.

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Going to Jacksonville next week to meet with a Pulmonologist to see what's causing me to have this diagnosis. I've had it twice in the last two years and don't want to get it again. Anyone have problems with this diagnosis?

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@albuqneece

Going to Jacksonville next week to meet with a Pulmonologist to see what's causing me to have this diagnosis. I've had it twice in the last two years and don't want to get it again. Anyone have problems with this diagnosis?

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Welcome to Mayo Clinic Connect, @albuqneece. You'll notice that I moved your message to an existing discussion about Cryptogenic Organizing Pneumonia (COP) so that you can connect with @spudmato @oakbourne @kp5450121 and others. You may also be interested in these discussions:
– Bronchiolitis Obliterans with Organizing Pneumonia (BOOP) https://connect.mayoclinic.org/discussion/boop-pneumonia/
– Obliterative Bronchiolitis (OB) v. ILD or CLD??? https://connect.mayoclinic.org/discussion/obliterative-bronchiolitis/

Albuqneece, I'll be interested in what you find out at your appointment with the pulmonologist. From what I understand COP is not an infection and the cause is unknown, which is frustrating. I read here on the American Lung Association's website that "A condition similar to COP may be occur as a side effect of certain medications." https://www.lung.org/lung-health-and-diseases/lung-disease-lookup/cryptogenic-organizing-pneumonia/symptoms-causes-risks.html
That might be something to ask the pulmonologist.

What treatments did you have the last 2 times you were diagnosed with COP?

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My COP continues to be managed by the use of Prednisone. The result is a suppressed immune system allowing for various micro bacterium. I seem to manage with a ten mg dose. Any less results in a flair up in symptoms.
As a reaction other issues have developed in my lungs, nodules which can’t be ruled out as malignant.
They are likely reactive.
My quality of life has been impacted.
Monitoring is accomplished via blood work and chest scans and x rays.
Prednisone is no one’s friend.

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HI y'all. I don't know about this type of pulmonary disease. My disease was BOOP PNEUMONIA. For one thing, Boop is not contagious and the problem is INFLAMMATION! Your lungs on X-ray are white. It's deadly in many ways but mine was caught early or late. Either way I survived. I used Prednisone and it nearly killed me. The drug is our enemy! I'd rather die that take that stuff. I looked on-line and found a book on BOOP and ordered it. Written by a wonderful caring pulmonologist MD. You can use an antibiotic, it'll take longer but it's better and easier on the body than Prednisone. That stuff literally drove me mad. Doctors don't give their kids Prednisone, but give it to us like candy.Grrrr! I used my hospital in Savannah and we have horrible health care in this town. I have silent Celiac Disease and Microscopic Colitis. MC is an autoimmune condition and is INFLAMMATION. I see a trend here. INFLAMMATION is a big problem in our body. It was hell in my life and Prednisone was an awful experience I will never revisit.

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Hi! Just got back from Mayo Clinic. There might be a correlation between GERD and COP…..I also have a Hiatal Hernia that needs to be fixed as small amounts of my stomach acid most likely get into my lungs. Also I was taken off of Prednisone (THANK HEAVENS) and will be on a l dose of Bactrim for the rest of my life ( I'm 56). The main Pathologist is reviewing my slides from my lung biopsies (3 of them)…so now we wait again….but I truly feel like someone will finally figure out the "cause and effect"…..((Prayers))

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@oakbourne

HI y'all. I don't know about this type of pulmonary disease. My disease was BOOP PNEUMONIA. For one thing, Boop is not contagious and the problem is INFLAMMATION! Your lungs on X-ray are white. It's deadly in many ways but mine was caught early or late. Either way I survived. I used Prednisone and it nearly killed me. The drug is our enemy! I'd rather die that take that stuff. I looked on-line and found a book on BOOP and ordered it. Written by a wonderful caring pulmonologist MD. You can use an antibiotic, it'll take longer but it's better and easier on the body than Prednisone. That stuff literally drove me mad. Doctors don't give their kids Prednisone, but give it to us like candy.Grrrr! I used my hospital in Savannah and we have horrible health care in this town. I have silent Celiac Disease and Microscopic Colitis. MC is an autoimmune condition and is INFLAMMATION. I see a trend here. INFLAMMATION is a big problem in our body. It was hell in my life and Prednisone was an awful experience I will never revisit.

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Hello! Thanks for the reply. BOOP is now the "new and exciting" COP…don't know why the name change. My visit at Mayo went well and I was very happy that they took me off of Prednisone and instead I will be on a low dose of Bactrim for the rest of my life. Dr.'s are reviewing lung biopsies and should hear something by next week. The wait continues and no known causes are known for now.

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@spudmato

My COP continues to be managed by the use of Prednisone. The result is a suppressed immune system allowing for various micro bacterium. I seem to manage with a ten mg dose. Any less results in a flair up in symptoms.
As a reaction other issues have developed in my lungs, nodules which can’t be ruled out as malignant.
They are likely reactive.
My quality of life has been impacted.
Monitoring is accomplished via blood work and chest scans and x rays.
Prednisone is no one’s friend.

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Hello. When were you diagnosed with COP. I too was put on Prednisone at 60 mg and now I've tapered it down to 0. Instead I have ben put on Bactrim low does antibiotic instead of the Prednisone. I feel MUCH better being off of Prednisone. There could be some correlation between COP and GERD and microscopic amounts of stomach acid could cause the COP. Also I medication called Tegratol, an anti-seizure that I was on for over ten years, could possibly cause COP also. I await test results from the Mayo clinic from my lung biopsies, How do you feel with COP…Do have any period of times where you are symptom free?

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@oakbourne

HI y'all. I don't know about this type of pulmonary disease. My disease was BOOP PNEUMONIA. For one thing, Boop is not contagious and the problem is INFLAMMATION! Your lungs on X-ray are white. It's deadly in many ways but mine was caught early or late. Either way I survived. I used Prednisone and it nearly killed me. The drug is our enemy! I'd rather die that take that stuff. I looked on-line and found a book on BOOP and ordered it. Written by a wonderful caring pulmonologist MD. You can use an antibiotic, it'll take longer but it's better and easier on the body than Prednisone. That stuff literally drove me mad. Doctors don't give their kids Prednisone, but give it to us like candy.Grrrr! I used my hospital in Savannah and we have horrible health care in this town. I have silent Celiac Disease and Microscopic Colitis. MC is an autoimmune condition and is INFLAMMATION. I see a trend here. INFLAMMATION is a big problem in our body. It was hell in my life and Prednisone was an awful experience I will never revisit.

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COP, I also feel that inflammation could be the root cause COP……..I took have Microscopic Colitis…Correlation here? What to you to try to not have as much inflammation in your body. I'm trying to get off sugar which I know causes inflammation. Prednisone is a gift and then then the Devil. Probably saved my life though so I am thankful for it. Just so happy to be off Prednisone….instead I'll be on a low dose of Bactrim for the rest of my life. Hey I'll take it~

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Hello! I also have COP. I just got back from Mayo in Florida where they ran a bunch of tests. They confirmed that I do have it and are testing for an autoimmune issue.also as usually the two go hand in hand. I was disappointed to learn that I will have to be on a low dose of Prednisone probably for the next 3 months and then tapering off. They also put ne on Bactrim three days a week which I will take for the rest of my life..

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