COP, not COPD: I have had recurring... - British Lung Foun...

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COP, not COPD

CKlein5852
CKlein5852

I have had recurring upper respiratory infections and sinus infections for years, even decades. I rec’d a face full of mold spores, when cleaning a home humidifier that was attached to my furnace, when I was 58. Since then, every few months, after a typical course of antibiotics and Prednisone, I would be diagnosed with another bronchitis or even pneumonia.

Last Monday (two and a half days ago), I felt terrible. I had chills and wheezing. (I always cough.). I went to bed about 9:30 p.m.; and, about 12:30 a.m., my wife woke me up and said my wheezing had steadily worsened. We checked my blood oxygen level, which is normally 96 in the day and mid-80s at night.

My O2% was 84; but, it would not go up, which ch is not a good thing. I had severe respiratory issues. We went to the ER where I was diagnosed with Acute Pneumonia, and it was discovered I had Sepsis. Thankfully, it was at least a Level II Trauma Center (Baylor Scott White in Grapevine [North Dallas], Texas).

I was admitted, and they started IV antibiotics and steroids. A Pulmonologist was brought in to consult and, luckily, he is an Intensive Care Unit (ICU) doctor who also has a private practice. Once he took an extensive history of my complicated medical condition (I also have Chronic Atrial Fibrillation.), he said he sees a lot of COP among ICU patients; he thought I might have that, too.

Cryptogenic Organizing Pneumonia ( COP) is not a Pneumonia, it is an Auto Immune Disorder that presents like Pneumonia. Cultures were negative for bacteria, which is typical of COP, while almost any Pneumonia was a bacterial component. Rather than yet another round of antibiotics and a many day prescription for Prednisone, the treatment is 24 weeks (or longer) of Prednisone. There may be side effects, which can be treated.

I am from Kansas City, and my Internist, my asthma specialist, and my Pulmonologist there had settled on a diagnosis of Chronic Bronchitis (a form of COPD) with Asthma being secondary. No one took a sputum culture in five years of treatments! None of them were academics, and none of them practiced outside of their offices, such as in an ICU.

It is now Thursday, and I will probably go “home” (We were visiting our son’s 2-week-old baby.) today or tomorrow. COP is not Pneumonia, and it is not infectious.

Also, my mother had an AID, Sjogren’s Syndrome. IF you have a parent who has or had an AID, you have a greater propensity for an AID, although perhaps a different one. I hope this helps for people who may be struggling with finding a proper diagnosis.

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I should have said I am 65 now. COP usually presents in one’s 50s or 60s.

Very interesting post so thank you for that CKlein. I wish you well. Xxxx

That's very interesting information. Thank you for sharing and hope you will be feeling better soon.

Thank you for taking the trouble to educate us about this condition. I have never heard of COP before. The names of some of the conditions are quite confusing. I am so pleased you managed to get both conditions diagnosed - such a deadly combination!

I hope you are discharged by now and hope you are able to enjoy visiting your family.

Best wishes

from

Twinkling Star

I was discharged late yesterday afternoon. Now, I only have to take 100+ Prednisone tablets over the next months. However, that is so much better than what I had been experiencing! Thank you for your reply.

Oh no! I had a terrible reaction to the Prednisolone drug. The problem was that I had been on it for over 4 weeks by the time I realised what it was doing to me and so it took months of careful reduction of the dose for me to be able to get off it. I think if I had NOT taken it at all I would not have survived though so probably a good thing that the severe side effects came as the levels built up in my body. It affected me physically as well as affecting my whole personality as well. The Consultant said the Prednisolone had caused me to suffer with secondary Cushing's Syndrome.

I hope you will be ok on it and will soon feel much better.

Best wishes

Twinkling Star

Hopefully, everyone is different. I have had Prednisone several times over the last few years. No problem so far; but I will have it a lot longer this time: at least 45 days. We’ll see.

There are a lot of people on here who have to take it regularly and they don't seem to get the problems which I had so I hope you will also be fine. As you have had it before at least you know how you were last time. I hope you will soon be feeling much better.

So far, after 60mg Prednisone for two weeks and 40mg for two weeks, I am dropping to 30mg (today) for two weeks; then 20mg, 10mg, and 5mg at 2-week Intervals. I have slight “swelling” in my face, but it seems only noticeable to me. So far, so good.

Otherwise, I have been symptom free of the problems I had had! My diagnosis seems to be finally correct!

I am pleased you have coped with the Prednisolone without anything drastic happening. So glad you are currently symptom free. It is often the delays in getting a diagnosis which causes the long term damage so it is always a relief that someone has got the diagnosis right for you.

Stay strong.

Love from Twinkling Star

Hello, I have COP in 2008 and took Prednisone in a high dose tapering over 6 months and got the all clear. Then in 2014 it came back but when they tried Prednisone again I developed Diabetes so had to be put on Mycrphenolate which I am still on but not getting better but losing muscle and less active and more breathless. I have had 6 chest infections in 12 months which they give me a short dose of steroids for and antibiotics which seems to work for a little while and then the coughing and mucus comes back. I’m not feeling too bad at the moment but get scared when I go to work in my office where 30 people work. If you have any advice I’d like to hear from you. Thanks Sonia 57 years old

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