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If you would like to submit information about your experience of the disease COP/BOOP, it can be placed at the bottom in a form. We welcome input from Health Professionals and Patients.

I am a 54 year-old man of normal weight 11st 7 lbs (160 lbs) 73 Kilos and height 5ft 10". I had suffered a bad cough with phlegm & malaise and was hospitalised at Addenbrookes Hosp in Cambridge UK in late May 2005 after a chest X-ray showed I had a massive chest infection and was diagnosed with pneumonia. I am a  normally healthy  male who does not smoke nor uses any drugs except highish consumption of wine.  After treatment with massive doses of intravenous antibiotics I was allowed home by the consultant Dr R. I saw Dr R a few days later and he said I was not responding to antibiotic treatment and that he thought I had a rare lung condition COP (Cryptogenic Organising Pneumonitis) also called BOOP in the USA. It's only seen in about 7 in 100,000 patients (not people) and he looked at me and smiled and said "but I will bet you will look it up and find out all about it on the internet". And sure enough I did, which is why this website was created to help other sufferers and help educate healthcare professionals who may never see a case of COP.

For the next 8 weeks I had many chest X-rays, CT scans, bronchioscopy biopsy and blood tests to confirm I was not suffering from other conditions like TB and then I had the confirmation I had COP and started on a high 60mg per day dose of Prednisolone steroid that had the condition under control and enable me to lead a normal life and recover. I had lost over 10 lbs in weight but gradually put it back on. Initially I suffered a slight side effect  to Prednisolone. I came out 9 days after starting the corticosteroids with a rash all over my abdomen, buttocks and rear shoulders. The rash was not painful nor itchy resembling chicken pox. but they are in fact the condition of folliculitis, otherwise teenage acne!

I continued the same dosage per day Prednisolone for the first month and my consultant reduced the dosage to 50 mg per day for next 4 weeks then reduced by 10mg each month until by Feb 2006 I was on 10mg. The other drawback at the early stages of high dosage which were of euphoria combined with insomnia. However I had an amazing improvement in my condition and energy levels and saw my "before and after" chest X-Rays which are like night and day!  Prednisolone is a wonder drug for treating this condition but not without severe side-effects.  I felt euphoric and like I was 30 again initially and awoke around 3am ready to take on the world but was not aggressive or violent.  This high energy effect and sleeplessness decreased as the prednisolone dose was reduced.

As I continued the lower prednisolone dosage the side effects were much reduced:  I also took 30mg Zoton (Lansoprazole) and later 20mg Nexium (esomeprazole) anti-reflux drugs to prevent stomach acid damaging the oesophagus. I do suffer indigestion and heartburn, especially if I forgot to take the Zoton.  One downside as the steroid dosage is reduced is that it is possible that other chest infections are likely and I was  treated with prophylactic doses of 960mg Septrin (co-trimoxazole) antibiotic three times a week to prevent this for the first few months. I also take a weekly dose of Alendronic Acid (70mg) to prevent Calcium loss and bone embrittlement.

In December I came out with a painful itchy rash under my arms that my GP diagnosed as Shingles (Herpes Zoster) that occurred because my immune system was compromised. I was immediately put on an anti-viral drug regime (Aciclovir) which reduced the pain in 2 days and the itching stopped a few days later and the skin rash disappeared after 2 weeks, although the Shingles reappeared 4 months later and was treated successfully again.

At the end of February I noticed I had weeping eyes that I thought was brought on by the cold weather but then I realised that persisted indoors. I also noticed that I had blurred vision in one eye. I went to my optician and they quickly diagnosed the onset of  a cataract in one eye. I consulted my lung physician and these are his comments:

Hi Shaun, The cataract is likely to be due to the prednisolone. This is a common side effect and can usually be dealt with if necessary. You need to be reviewed by an ophthalmologist who can give us some more information. The dose of steroid is being reduced - and as I explained last time it is now weaned at a steady rate that will allow your own adrenal glands to start working again. Once the dose of steroid is 7.5mg it is a replacement dose - ie a dose that is equivalent to what your body makes. As your own adrenal glands will not be making much steroid, if this is lowered too quickly you will feel symptoms of steroid insufficiency. I would recommend continuing the current regime that we discussed, but as soon as you have had your appointment with the ophthalmologist contact me so we can factor this in.
I then asked him if it was ok too lower the daily dose of Prednisolone to 7.5mg, one week earlier than planned and what were  the symptoms of steroid insufficiency.
Shaun- yes- you could start 7.5mg from now. Steroid insufficiency is potentially worse than reoccurrence of COP. Tiredness, low blood pressure, collapse, blood electrolyte disturbance, weight loss, loss of appetite, diarrhoea are some of the side effects! Hopefully you should be at low risk of reoccurrence from COP but you are at high risk of steroid insufficiency if the dose of steroid is lowered too rapidly below 7.5mg/day. A lot depends on what the ophthalmologists say regard to the severity of the cataract and the significance of the raised intraocular pressure. This problem is a very common one in people on steroids, and most of them are like you are not in a position to stop steroids suddenly. Some people are on much higher doses of steroids which cannot be weaned due to the underlying disease for which they receive steroids. I would anticipate that you would be off steroids in the next few months- weaning at 1mg per month which is the standard rate. We would possibly do this slightly quicker but a lot depends on whether you develop any symptoms of steroid insufficiency when we get below 6mg/day. When you are reviewed by the ophthalmologists you could let them have this information- or they could contact me directly. It would also be worth asking your GP to check your blood sugar. regards, Ravi

May 2006: Subsequently I have seen the ophthalmologist and expect cataract surgery in a few months. The onset of the cataract in one eye was extremely rapid within 2 months of first noticing it, with that eye now being almost useless for distance vision or reading even with corrective lenses. My prednisolone dose is now decreased to 4mg per day and will lower again to 3mg in another month; however I am advised that the prednisolone dose needs to be temporarily increased for the cataract operation because of the body's inflammatory response during surgery. I had the cataract operation in August and it was entirely successful.

July 2006: I was down to 2mg Prednisolone daily but noted that my cough had reappeared with a tight chest and yellow sputum. I emailed my consultant who had me into his clinic rapidly and the X-ray showed the bad news. My COP/BOOP had reappeared. He said I was one of those cases where the disease reappears as the steroid is almost withdrawn. He put me back on 25mg Prednisolone for the next 6 weeks and a second X-ray showed the patch on my right lung is half the size after 2 weeks of treatment and 4 weeks later it had decreased substantially. I am on a reducing prednisolone dose lowering every 2 weeks by 5mg but it looks like I will be on steroids for some months and possibly at a 5mg dose for life.

Nov 2006: My prednisolone is now down to 6mg daily and my lung consultant told me last week that the X-ray show the patch on my lung has almost disappeared. I will decrease steroids by 1mg each month and review it when I see him again in Jan 2007. I have a cough but he believes that is caused by acid reflux heartburn.

Jan 2008. I caught a nasty chest virus after Christmas and stared coughing again with yellow phlegm/sputum. I self-refered to my lung consultant who told me I had a patch on my left lung shown by X-Ray and this was pneumonia. I was put on strong antibiotics for a week and then upped my prednisolone from 2.5mg to 20 mg. By April the patchiness had disappeared and am now tapering down again to 10mg daily. It is likely I will be on low dose steroids for the foreseeable future.

SC Cambridge UK

Jan 2008.
Hello, my name is Rebecca, we live in Texas. My husband Joe, 42, was diagnosed with COP/BOOP in late December '07 after 3 months of numerous X-rays, CT scans, bronchioscopy, blood tests, and a lung biopsy. Like most of you, Joe does not smoke, no drugs, does drink beer and rarely gets sick or catches a cold. He is very active, golf, softball, running, yard work, and went to the gym 3 to 4 times a week (he wasn't over weight but watched his weight).

Joe was put on Cell Cept now @ 2000 mg a day and Prednisolone steroid 1000 mg for 3 days and reducing to 80 mg and then every 7 days by 5 mg. He is now on 40 mg.

I feel that Joe needs someone other than myself to talk to that has gone or is going thru this trying experience. Since COP is uncommon, the Dr.'s did not have someone that we could contact. By reading your experiences and seeing what my husband has gone thru my feelings go out to you all. I am hoping someone will respond with an email address so I may give to Joe.

Becky

1st May 2007 Hello Shaun,  I've just read your article outlining your experiences of the above illness.
 
I am a 60 year old Insulin Dependent Diabetic and was first diagnosed with Cryptogenic Organising Pneumonitis (COP) about ten years ago.
 
I was experiencing very high blood sugars, high temperatures and shortness of breath, along with periods of disorientation/halucinations and no appetite.  After two weeks in hospital my consultant (who was mystified at what was actually wrong with me and admitted that he was extremely worried about me but did not know what was wrong with me) sent me for a Bronchoscophy.  Whilst I was in the operating theatre the consultant at the Conquest Hospital in Hastings actually informed me that he thought that I had COP - the results of the Broncoscophy confirmed this.  My consultant then researched the illness (although not a lot was known about it at that time and there was nothing on the internet) gave a presentation to his colleagues at Eastbourne District General Hospital about the disease.
 
Prior to this diagnosis I had been subjected to trials of different medications - all to no avail.
 
After the confirmation of COP I was treated with Prednisilone - 60 mg. per day - which caused my weight in increase substantially as it made me want to eat constantly and I was very aggressive.  I was on this dosage for several months and then gradually reduced.  The whole experience of steriods was not at all pleasant but at least I was able to breathe properly and felt slightly better - although my Diabetes was seriously affected.
 
I continued to improve and gradually reduced the dosage although I had increased my weight by two stone.  After some considerable time I felt better and was finally taken off the steroids.
 
Unfortunately the symptons reappeared and I have actually had three more relapses - each time being put back onto steroids but fortunately I was able to recognise the symptoms and contacted my consultant immediately.  Prednisilone has left me with severely weakened leg muscles along with other side-effects and is not an experience I would wish to repeat.
 
In recent years my Consultant tried me on Cyclophosphamide but this caused serious side effects.  He has started me on a daily dose of 100 mg of Azathioprine during the past three years - this suppresses the immune system as they have now discovered that an overactive  immune system is a major contributor to COP.   I must admit that I have not suffered so many side effects as with Prednisilone and I have gradually reduced the dose to 50 mg. per day.  I have monthly blood tests to check my white cell blood count and six monthly check-ups with my Consultant at Eastbourne DGH but I do worry about the long term effects of taking this medication.  My Consultant has advised me that as I get older my immune system will probably reduce and then I may be able to come off the medication - but we will have to wait and see!
 
The whole experience of COP has not been at all pleasant but I have been very lucky to have such a brilliant GP and Hospital Consultant who have both been very supportive.  There does appear to be more information on the condition than when I was first diagnosed and it is useful to read other people's experiences.  I hope that my contribution is of interest to you.
 
Anne (Eastbourne)
I became unwell in March 2000 at the age of 34.  I was a fit and usually healthy young Mother of 2 children aged 5 months and 21 months.  It started with a shortness of breath that gradually became worse over a short period of time.  I was examined by a GP and had a clear chest and was given oral antibiotics with no improvement.  I then had a second course of antibiotics which also had no effect. Eventually I went to casualty where they tested me for a Pulmonary Embolism which proved negative.  Although they wanted to keep me in I went home to look after my family.  About two weeks later I became cyanosed (blue) and felt so unwell due to my shortness of breath that I was admitted to Joyce Green Hosp in Dartford for further tests.( the hospital is no longer there).  My BP was 70/50, my sats were 89% on air and I was pyrexic  (high temperature)..  The chest x-rays showed white patches to all lung fields and I was on 24hr oxygen.  After the week of antibiotics I was worse.  They simply didn't work and I felt so unwell that I was bed bound and could not exert myself at all simply because I couldn't breathe.
 
I was sent to St Thomas's Hospital, London for a lung biopsy and bronchioscopy.  Funnily enough, after those procedures I felt slightly better but I was tested for every lung disease going including PCP the pneumonia associated with HIV.  I am a Paramedic in the London Ambulance Service so they thought that I could have contracted something in my line of work. I was under the consultant Dr M and he eventually diagnosed COP.  I went straight onto 40mg of Prednisolone which was a miracle cure.  Within weeks I could breathe, even yawn adequately!  I was on Prednisolone on a tapered dose for 18 months, had repeated lung function tests for 4 years and off sick from work for nearly a year.  I was told that it could come back and panicked every time I thought my breathing got worse.  I was also left with some lung damage but live a normal life.
 
At the time there was not much information around about COP and I was put in touch with a girl in Australia who was far worse than I was and I think she was on an anti cancer drug to try and wipe it out. It had devastating effects for me and my family.  I was struggling to look after 2 babies while very unwell and in hospital for weeks.  They used to say to me that if my sats were above 92% I could visit my children for 2 hrs at night.  With little support from my husband, my marriage broke down. However, Dr M said that I had been placed on some database about COP and with your work, hopefully this disease will be looked at more carefully.
Samantha T, London UK

I am a High School Physical Education teacher in Iowa (US), I fell and tore my rotator cuff and had surgery to repair it. About a week after surgery I got really sick. They told me I had pneumonia and put me on antibiotics. I was not getting better so they put me in the hospital for 15 days. Test after test were done and no one knew what was wrong. Finally after 6 months, I was told I had BOOP. I have been on prednisone for almost a year. I started at 40mg. with methotrexate and am tapering down right now. I am on 5mg every other day for two weeks. Then I will be off of it for the first time in a year. The way I feel I don't know if I can come completely off of it. I don't know if I have permanent damage or not. I get really tired and short of breath. Exercise does help. I try to walk an hour a day at least four days a week. I am still able to work but I get really tired and winded.
I am going to the doctor on the 15th of this month. I get a breathing test and a CAT Scan. I will be all off of prednisone next Saturday and that will be the first time in a year. If I don't get any worse then I probably do have some damage that I will just have to learn to live with. I too have puffy cheeks and have gained weight. That has been the worst part.
Theresa, Iowa USA

I am a 50 year-old woman living in Minnesota. In Aug 2004, after feeling odd in my lungs for 6 months, I collapsed after a cold/sinus infection bout. I had pneumonia - the patchy crackles, et al. They gave me antibiotics in the hospital. I got worse. They gave me antibiotics that I was allergic to, I got worse with an extensive red rash. They guessed after 2 weeks that it might be BOOP, and put me on steroids. They also did a lung biopsy. Mayo came back with results much later that indicated it was actually eosinphilic pneumonia. There's very little difference between the two. The treatment for that and BOOP is the same. Steroids!

I went off the steroids in July 2005. I had back surgery in Sept., and they boosted the steroids to get me through that process. Unfortunately, the pneumonia came back the week after the surgery and I was back in the hospital. I only stayed a week as they knew to treat me with steroids. It cleared up amazingly fast.

The first bout, I missed about 3 months of work, the 2nd bout I only missed about 90 days. In each case I was mentally, physically, intellectually exhausted. It was a slow healing process that simply amazed me. Of course I lost 15 lbs each time, but the steroids took care of that quickly and I'm currently about 20 lbs overweight. I have damage to my lungs from the initial bout.

I'm looking for a support group and cannot find one. No one has this disease. No one knows the fear of coming across someone who has the flu or a cold that might put us right back in the hospital. When its rains, I can't breathe well, when its cold, my lungs hurt. I gasp for air frequently as I sit and watch TV. I fear I'm getting it again. I hate the steroids, but I can't live without them I'm told. They'll ruin my eyes, my bones, my immunity.

At home I have a supportive family and they encourage me to get some exercize and fight the weight gain with a better diet. I try to do those things, the scale tells me I'm failing. I worry that I won't be loved because I'm fat and short of breath and unable to do all the things we used to do physically. And there is always that fear in the background that I'll get it again, and go thru the whole process all over again. I read everything I can on the internet about the disease and treatment. Looking to be whole again. Antidepressants help a lot. Friends and family help even more. And every 8 weeks I do breathing tests, Xrays, and a visit with my friendly Pulmonary Physician. If anything happens, I know he'll be there for me.

For now, I live my life, and try not to think about what might happen next....

JoAn H

I was interested to read the COP/BOOP stories you have posted. It is frustrating to learn that there are no support groups, and very little information among the general public. Your site is the first exchange of information that I have seen. Here, in brief, is my story: I entered the hospital (Anne Arundel Medical Center in Annapolis, Maryland, USA) by ambulance on December 29, 2005. I am a 74-year-old woman, was in excellent health, and took no medications at the time. I had felt a bit run-down for about a month, shortness of breath developed and I actually could barely breathe at all when my husband called the ambulance. I spent ten days in intensive care, five more in a regular hospital room, received antibiotics, prednisone, and was tested for just about every disease known to man.

After the long hospital stay I had blood clots in both legs, could not stand or walk, and was sent to nursing/rehab. After two weeks there I was able to get about with a walker and went home. The medications continued including prednisone, lasix, coumadin, prilosec and others off and on. I was able walk with a cane when hypotension caused a bad fall and sent me back to nursing/rehab for a month. Over the past eleven months I have had periodic CT scans which show reduction in the BOOP (but not total absence) and pulmonary function tests are reasonably good.

By August I was walking without a cane, but in September I developed two compression fractures of the spine. This is undoubtedly the work of the prednisone. I have had other peculiar little side effect and residuals including having dental work fall out, strange calluses and irritations on my hands, losing some hair and having some foot problems. I have had marvelous medical care. The pulmonary doctor identified the BOOP and has monitored the medications - I am now down to 15 mg of prednisone per day and hope it will be reduced further before long. I am most grateful to be breathing and walking, but do get discouraged with new developments such as the fractures.

We happen to live in the county which has the the 18th worst air pollution of all the counties in the United States. I worry about the effect of this on everyone, especially children who seem to be developing more and more asthma and other lung diseases. Since developing BOOP I wonder why we do not do more to educate people about taking care of their lungs. Everyone learns about heart disease, cancer, and obesity, but now that TB is of less concern than it used to be, it seems that no one worries about lungs except in connection with smoking.

Priscilla M. T

Hello!
I have recently found your website which has been very informative to me as I too have recently been diagnosed with COP.
I just turned 50 in March 2008 and exactly a month later was admitted to University Hospital in Cardiff with severe shortness of breathe, dry cough and very high heart rate. The chest x rays showed what the doctors thought was Double Pneumonia and I was put on 2 different antibiotics and sent home after 5 days. Needless to say these didn't work and within 4 days I was back in hospital feeling even worse. I had a feeling there was something else going on as I'd had Pneumonia 3 years earlier and I felt very differently then and the symptoms weren't exactly the same.
After several blood tests and a CT scan I was transferred to a specialist chest ward at Llandough Hospital on the outskirts of Cardiff under the care of a fantastic team of doctors lead by my Consultant. I then had a Bronchioscopy which came back with the diagnosis of COP.
I was put on 60mg of Prednisolone for the first 4 days and then had it reduced to 30mg and am still on that dose 2 months later.
Since coming home from hospital after 23 days, my whole life has changed. I have always been fit and active and have a physically demanding job that so far has been impossible for me to return to.
Reading other people's experiences of this disease has been quite an eye opener as I had no idea when I first had this that it is so debilitating.
My first few weeks at home I could hardly walk upstairs but gradually I did get stronger until now, 2 months later I feel I have reached a level that I can't get past. Probably due to the steroids, I wake every morning at 4am, get up at 5 and start pottering around. By midday I am absolutely exhausted and stay that way for the rest of the day. If I go out, shopping etc, that is such a drain and I tend to wobble, even lose my balance at times and feel so tired! I find it so frustrating and upsetting that I can't do half the things I used to do.
I know it is early days for me but even with the steroids helping me to breathe, I still struggle with breathing some days even when I am just sitting down and not exerting myself.
Does anyone else experience this?
My first outpatients appointment with my Consultant is next week and I will be very interested to see what he has to say and I hope he doesn't decide to reduce my dose of steroids just yet judging by other people's experiences of this.
My husband and family have been fantastic through all this and without them I don't know where I'd be especially when I was in hospital all that time not knowing what was wrong and dreading the worst. Their love and support really kept me going and I'm sure will keep me going however long it takes me to get rid of this THING!

Ifanna D Cardiff Wales,UK July 2008.

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eMail your info and a short background of your condition and how it was diagnosed and treated. Send it to me at the following address 

Updated: 07-Jul-2008