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..
Does anyone have severe COP? My dad has COP and it has progressed quickly. I was wondering what treatments were used on the more severe cases and what doctors specialize in COP? Thank you
Ethan,
Thanks for the article. COP is not fully understood, and generally uncurable.
Manageable is the best hope. that I have at the moment.
The nodes on my lungs improve and become worse as time passes.
I'm now on 10 mgs of Prednisone.
It, as you likely know, has long tern negative effects, including immune suppression. Take your pick😁
Does anyone have severe COP? My dad has COP and it has progressed quickly. I was wondering what treatments were used on the more severe cases and what doctors specialize in COP? Thank you
Hi Bridget, sorry to hear that your dad has severe and quickly progressing COP. At Mayo Clinic, several specialties work together to care for patients with COP, including Cardiovascular Surgery, Critical Care, Extracorporeal Membrane Oxygenation (ECMO) Program, Infectious Diseases and Pulmonary Medicine.
@spudmato may have more information and experience to share.
Bridget, has you dad seen a pulmonologist or infectious diseases specialist?
Bridget, Not much to add; still COP is just one of the "incurable lung issues (I have two including currently and for a number of years, COP).
It, as you probably know is in the tuberculosis family.
There is apparently two treatments ta may control this disease, prednisone is the treatment I have been having for a number of years. I can't stop it, or it flairs up (it is still a moving target, but generally under control). My immune system is compromised due to the treatment, but I have no choice.
A pulmonologist is the key player in this situation. There is plenty of background for this disease, and there should be help forthcoming for you father (and you). I don't see it as an infectious disease area, nor cardiology, and hopefully not critical care.
Blood tests: C- reactive protein high sensitivity, CBC and differential are two common tests related to this situation.
Inflammation ,ad the build up of the nodules covering the lungs are the determinants.
Best'John
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))
I was told my COP was caused from me aspirating stomach acid into my lungs on a nightly basis. I have had to have an esophagealectomy because the acid was so severe I got Barrettes Esophagus too. I also have Nodules in my lungs and went into respiratory failure during a lung biopsy that put me in ICU on a ventilator for 2 weeks in a coma.
I was told my COP was caused from me aspirating stomach acid into my lungs on a nightly basis. I have had to have an esophagealectomy because the acid was so severe I got Barrettes Esophagus too. I also have Nodules in my lungs and went into respiratory failure during a lung biopsy that put me in ICU on a ventilator for 2 weeks in a coma.
Hi. I was exactly the same. I was literally waking in the night choking on this acid. I knew it had gotten in my lungs as I had to get up and walk around coughing it up. I could literally hear it rattle in my chest! Thinking it was just indigestion I started eating my last daily meal at 4 pm. I'd take an antacid before bed but it was usually ineffective. Then in August I was rushed to hospital and put in ICU for 5 days with "pneumonia" although in the day and hours proceeding this i was doing my usual housework, errands, and had energy. I just suddenly lost all air and i dropped. 2 weeks after being sent home i collapsed again, this time with suspected sepsis and needed intubation/life support. I'd never heard of COP until I saw this post! I've had ct scans, a bronchoscopy which showed nothing significant but ground glass opacities. I told the doctors about the GERD and choking on this horrid acid at nights but no one is saying oh maybe that's worth a check! They just gave me GERD meds and are saying severe pneumonia. Yet I had no pneumonia symptoms and a normal white cell count. No cough, no mucus, no fever, no chills, no trouble breathing until I literally collapsed. The 2nd time was different due to lower 02, dry cough then the rest that accompanies sepsis. That was 3 months ago. I'm on no 02 and no meds. But building strength back up after body deconditioned. Can you still work? What are your symptoms now? Hugs to you and thank you!
I was recently diagnosed with COP by my (non-Mayo) pulmonologist in AZ.. I spent 34 days in an AZ hospital in 2022. Eventually had a lung biopsy at Mayo in Rochester in Oct 2022, but no diagnosis was made at that time. Was being prepared for a lung transplant with a Fundoplication surgery to prevent GERD, which was a suspected cause. I’ve been on prednisone for over 2 years. Currently on 20 mg of prednisone daily, but inflation is still an issue, along with coughing and phlegm production. I am also taking 1000 mg of mycophenolate twice daily. Although I have improved by, and I am thankful, my life has been significantly impacted. I am still require supplemental Oxygen. I am working to get back to Mayo for their confirmation of the Diagnosis.
I was recently diagnosed with COP by my (non-Mayo) pulmonologist in AZ.. I spent 34 days in an AZ hospital in 2022. Eventually had a lung biopsy at Mayo in Rochester in Oct 2022, but no diagnosis was made at that time. Was being prepared for a lung transplant with a Fundoplication surgery to prevent GERD, which was a suspected cause. I’ve been on prednisone for over 2 years. Currently on 20 mg of prednisone daily, but inflation is still an issue, along with coughing and phlegm production. I am also taking 1000 mg of mycophenolate twice daily. Although I have improved by, and I am thankful, my life has been significantly impacted. I am still require supplemental Oxygen. I am working to get back to Mayo for their confirmation of the Diagnosis.
@larryma oh, I’m so sorry.
Over the last few years I have been on and off prednisone. That stuff tears up the stomach and causes terrible GERD. As soon as I started taking high doses of prednisone they immediately put me on Pantoprazole for my stomach. It helped for a while.
Even after stopping the prednisone , I still take the Pantoprazole because I have GERD. Last year I started coughing terribly like never before. It was especially bad when I would lie down. I was coughing copious amounts of thick stringy mucus.
I went to my ENT who said the cough is a result of the GERD! I thought he was crazy…he told me to drink Mylanta liquid right before going to bed. It helps. I do it every night and hardly cough at all now.
I hope you are able to get some relief. I’m also in Arizona. 🌵
HELLO YALL, I need some HELP please! Hubby has been in ICU 2 weeks and extended stay acute hospital for 11wks and is WORSE now than it seem before. They think he has cryptogenic OP (prior called BOOP). He has been on 60mg of Prednisone and down to 30mg. They tried CellCept and hubby had 'allergic' reaction. Got fluid in lungs, and O2 back up to 15L from 8L that we had him down to....He is a heavy set guy, had triple by pass 2013 with no meds or problems since. Always has had bad seasonal allergies, so the coughs and hacks went unnoticed by us, also the shortness of breath due to gaining 20# (now 308). He had Pneumonia from Mid Jan to Mid Feb...symptoms were gone, but of course the scans lingered. He was feeling great on a Friday and by Monday was tired and didn't want to climb the stairs to go to bed, wanted to sleep on the couch, which he loved to do (for years now). He didn't tell me he wasn't feeling good, just tired. We had already had his heart checked out and all was good. Had seen a pulmonologist on Thursday of the week and Friday I ordered a pulse ox, tested him Saturday and PO was 73. googled how bad that was and off to he hospital we went. The 2 wks of ICU began @ St Thomas West in Nashville, than moved to the 6th floor where Select Specialty hospital is located. I am not convinced that we are getting the correct treatment and there is very little out there to learn from...or is very out dated. Doctor tried to send him home at 10L of O2 and I wouldn't have it, how were we to react when he desats? no where to go. That is where the CELLCEPT came in and has set us back 3 weeks. His O2 over this weekend went from 12L back to 15L and resting O2 in the chair is 85-90.
they started a new med last night:....
Imuran, which is the brand name for azathioprine.
Azathioprine is a type of immunosuppressant that helps to calm or control the body's immune system. It's used to treat various conditions, including:
Rheumatoid arthritis
Crohn's disease and ulcerative colitis
Severe inflammation of the liver, skin, or arteries
Some blood disorders
To prevent organ rejection after a transplant
***** I was not happy with this new med, but out of options*****
I am grateful to see Bactrim as an option. I am deathly allergic to it, but hope he isn't. Also, grateful that others have shared their experiences. I am lost with no direction. The internet hasn't been much help. I am in desperate need of guidance and sound knowledge.
They are alluding to a lung transplant???!!!! Prednisone to Lung transplant??? nothing in between?
then they said he wasn't elig due to weight (ok he can lose it), and had Bypass with cracked chest...? We are close to Vanderbilt Hospital and the doc has been communicating with them, but was told they would be doing the same thing that the current doc is. Dr stated Vandy only wants potential transplant patients. SMH!
Any more info, suggestions, stories, help and hope is GREATLY APPRECIATED!.
thanks so much
Dana and Jamie
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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..
Does anyone have severe COP? My dad has COP and it has progressed quickly. I was wondering what treatments were used on the more severe cases and what doctors specialize in COP? Thank you
Ethan,
Thanks for the article. COP is not fully understood, and generally uncurable.
Manageable is the best hope. that I have at the moment.
The nodes on my lungs improve and become worse as time passes.
I'm now on 10 mgs of Prednisone.
It, as you likely know, has long tern negative effects, including immune suppression. Take your pick😁
Hi Bridget, sorry to hear that your dad has severe and quickly progressing COP. At Mayo Clinic, several specialties work together to care for patients with COP, including Cardiovascular Surgery, Critical Care, Extracorporeal Membrane Oxygenation (ECMO) Program, Infectious Diseases and Pulmonary Medicine.
@spudmato may have more information and experience to share.
Bridget, has you dad seen a pulmonologist or infectious diseases specialist?
Bridget, Not much to add; still COP is just one of the "incurable lung issues (I have two including currently and for a number of years, COP).
It, as you probably know is in the tuberculosis family.
There is apparently two treatments ta may control this disease, prednisone is the treatment I have been having for a number of years. I can't stop it, or it flairs up (it is still a moving target, but generally under control). My immune system is compromised due to the treatment, but I have no choice.
A pulmonologist is the key player in this situation. There is plenty of background for this disease, and there should be help forthcoming for you father (and you). I don't see it as an infectious disease area, nor cardiology, and hopefully not critical care.
Blood tests: C- reactive protein high sensitivity, CBC and differential are two common tests related to this situation.
Inflammation ,ad the build up of the nodules covering the lungs are the determinants.
Best'John
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Like -
Helpful -
Hug
1 ReactionI was told my COP was caused from me aspirating stomach acid into my lungs on a nightly basis. I have had to have an esophagealectomy because the acid was so severe I got Barrettes Esophagus too. I also have Nodules in my lungs and went into respiratory failure during a lung biopsy that put me in ICU on a ventilator for 2 weeks in a coma.
-
Like -
Helpful -
Hug
2 ReactionsHi. I was exactly the same. I was literally waking in the night choking on this acid. I knew it had gotten in my lungs as I had to get up and walk around coughing it up. I could literally hear it rattle in my chest! Thinking it was just indigestion I started eating my last daily meal at 4 pm. I'd take an antacid before bed but it was usually ineffective. Then in August I was rushed to hospital and put in ICU for 5 days with "pneumonia" although in the day and hours proceeding this i was doing my usual housework, errands, and had energy. I just suddenly lost all air and i dropped. 2 weeks after being sent home i collapsed again, this time with suspected sepsis and needed intubation/life support. I'd never heard of COP until I saw this post! I've had ct scans, a bronchoscopy which showed nothing significant but ground glass opacities. I told the doctors about the GERD and choking on this horrid acid at nights but no one is saying oh maybe that's worth a check! They just gave me GERD meds and are saying severe pneumonia. Yet I had no pneumonia symptoms and a normal white cell count. No cough, no mucus, no fever, no chills, no trouble breathing until I literally collapsed. The 2nd time was different due to lower 02, dry cough then the rest that accompanies sepsis. That was 3 months ago. I'm on no 02 and no meds. But building strength back up after body deconditioned. Can you still work? What are your symptoms now? Hugs to you and thank you!
I was recently diagnosed with COP by my (non-Mayo) pulmonologist in AZ.. I spent 34 days in an AZ hospital in 2022. Eventually had a lung biopsy at Mayo in Rochester in Oct 2022, but no diagnosis was made at that time. Was being prepared for a lung transplant with a Fundoplication surgery to prevent GERD, which was a suspected cause. I’ve been on prednisone for over 2 years. Currently on 20 mg of prednisone daily, but inflation is still an issue, along with coughing and phlegm production. I am also taking 1000 mg of mycophenolate twice daily. Although I have improved by, and I am thankful, my life has been significantly impacted. I am still require supplemental Oxygen. I am working to get back to Mayo for their confirmation of the Diagnosis.
-
Like -
Helpful -
Hug
1 Reaction@larryma oh, I’m so sorry.
Over the last few years I have been on and off prednisone. That stuff tears up the stomach and causes terrible GERD. As soon as I started taking high doses of prednisone they immediately put me on Pantoprazole for my stomach. It helped for a while.
Even after stopping the prednisone , I still take the Pantoprazole because I have GERD. Last year I started coughing terribly like never before. It was especially bad when I would lie down. I was coughing copious amounts of thick stringy mucus.
I went to my ENT who said the cough is a result of the GERD! I thought he was crazy…he told me to drink Mylanta liquid right before going to bed. It helps. I do it every night and hardly cough at all now.
I hope you are able to get some relief. I’m also in Arizona. 🌵
HELLO YALL, I need some HELP please! Hubby has been in ICU 2 weeks and extended stay acute hospital for 11wks and is WORSE now than it seem before. They think he has cryptogenic OP (prior called BOOP). He has been on 60mg of Prednisone and down to 30mg. They tried CellCept and hubby had 'allergic' reaction. Got fluid in lungs, and O2 back up to 15L from 8L that we had him down to....He is a heavy set guy, had triple by pass 2013 with no meds or problems since. Always has had bad seasonal allergies, so the coughs and hacks went unnoticed by us, also the shortness of breath due to gaining 20# (now 308). He had Pneumonia from Mid Jan to Mid Feb...symptoms were gone, but of course the scans lingered. He was feeling great on a Friday and by Monday was tired and didn't want to climb the stairs to go to bed, wanted to sleep on the couch, which he loved to do (for years now). He didn't tell me he wasn't feeling good, just tired. We had already had his heart checked out and all was good. Had seen a pulmonologist on Thursday of the week and Friday I ordered a pulse ox, tested him Saturday and PO was 73. googled how bad that was and off to he hospital we went. The 2 wks of ICU began @ St Thomas West in Nashville, than moved to the 6th floor where Select Specialty hospital is located. I am not convinced that we are getting the correct treatment and there is very little out there to learn from...or is very out dated. Doctor tried to send him home at 10L of O2 and I wouldn't have it, how were we to react when he desats? no where to go. That is where the CELLCEPT came in and has set us back 3 weeks. His O2 over this weekend went from 12L back to 15L and resting O2 in the chair is 85-90.
they started a new med last night:....
Imuran, which is the brand name for azathioprine.
Azathioprine is a type of immunosuppressant that helps to calm or control the body's immune system. It's used to treat various conditions, including:
Rheumatoid arthritis
Crohn's disease and ulcerative colitis
Severe inflammation of the liver, skin, or arteries
Some blood disorders
To prevent organ rejection after a transplant
***** I was not happy with this new med, but out of options*****
I am grateful to see Bactrim as an option. I am deathly allergic to it, but hope he isn't. Also, grateful that others have shared their experiences. I am lost with no direction. The internet hasn't been much help. I am in desperate need of guidance and sound knowledge.
They are alluding to a lung transplant???!!!! Prednisone to Lung transplant??? nothing in between?
then they said he wasn't elig due to weight (ok he can lose it), and had Bypass with cracked chest...? We are close to Vanderbilt Hospital and the doc has been communicating with them, but was told they would be doing the same thing that the current doc is. Dr stated Vandy only wants potential transplant patients. SMH!
Any more info, suggestions, stories, help and hope is GREATLY APPRECIATED!.
thanks so much
Dana and Jamie