March 18, 2015

BOOP Community and Support Group at Epler Health

 

Welcome to the BOOP Community and Support Group. Please ask your questions and give your comments. I will periodically check in and add my perspective. This is a health information and education community, and not a source of physician-directed diagnosis and treatment. 

 

2015/03/21

Gary said:

Welcome everyone. Look forward to hearing from you. Gary Epler

2015/04/04

marjorie said:

I have been dealing with BOOP pneumonia for 1 year now. After getting very sick, I was finally diagnosed and put on Prednisone August 1, 2014.
I recovered well with the Prednisone, but am discovering that it is quite another thing to wein off the drug with out the BOOP symptoms recurring.
I started with 50 mg. per day for the month of August, but every time I go below 15 mg. – the BOOP returns (Not severe- just the clicking sound in my lungs, but it shows up on the X-ray). I am back up to 30 mg. again and will try for the 4th time to reduce the dose.
The last time- my doctor reduced from 30 mg. down 5 mg every 2 weeks, and I think it was too fast. He seems very confused as how to do it.
The disease is very rare, and no-one seems to have much experience dealing with it.
I’m worried that this may be a chronic condition and I’ll have to stay on a low dose of prednisone indefinitely. I’m worried about the long term affects.
Dr. Epler- can you give me any guidance on how to wein off the drug? Thank-you.

2015/04/08

Gary Epler said:

Marjorie – the finding that you have no recurrence until 15 mg is a good sign as people with recurrent BOOP who develop recurrence at below 20 mg daily almost always have a favorable outcome over time because typical BOOP does not become resistant to prednisone and eventually resolves. Restarting at 30 mg with 5 mg decreases is generally used in this situation. An ongoing pulmonary rehabilitation program and exercise program can be helpful during this phase of BOOP, and it can help decrease the highs and lows of the prednisone treatment. I wish you good health and success with management of the BOOP.

2015/04/15

Kathie W said:

Hello. I am a woman aged 53 who was diagnosed with BOOP April, 2015, after a percuntaneous lung biopsy April 1. A CT chest scan showed a 10mm nodule with a 4mm satellite nodule in the lower left lobe and a 5mm nodule in the right lower lobe on 3/27/15, which was done because a 1.4 nodule in the left lower lobe was seen on a chest x-ray done 3/22/15 (which was done in an immediate care clinic where I showed up with accelerated hypertension and a week of feeling vaguely unwell.) I did not have any respiratory symptoms until after the lung biopsy. Since then, I have had a cough (blood flecks were in my tiny amounts of sputum for only 4-5 days after the biopsy, as I had a small hemorrhage during the biopsy procedure) and SOB and fatigue with activity. Had a chest x-ray 2 days ago, 4/13/15, to rule out pneumothorax, and the doctors office called to say the x-ray was fine. I see a pulmonary doctor in a week. My healthcare is taking place in Kalamazoo, Michigan, through the Borgess healthcare system. I have read a few medical articles about BOOP and I have read your book. I am rather excited that the doctor who first categorized this condition has an interactive website! As I get more information about what the plan will be for my treatment, I will post here. I heartily welcome any input you care to offer. :)

2015/04/18

bob covey said:

wife got boop 8 yrs ago shes still on predesone and on 2 liters of o2 hips are dissolving ones been replaced left side of jaw almost gone right not as bad yet shes 61 family doc had no clue had her on 6 kinds of antibiotics drugest refused to fill any more scripts was in hospital 2 weeks lung hospital 1 week rehab 2 weeks no one had a clue was on 5 liters o2 could not walk aunt said shes going to dr stephen salloway her reumatoligest he can figure out anything he gave me hell for not bringing her there first why should i she had a long problem he threw all previous teste in garbage was in office 6 hrs next day he called told us to bring her to his infusion room right away he said she had boop he gave drip of 1 gram of predesone for 3 days straight she was climbing walls after 60 mgs a day with 30 mgs of cytoxin for 3 yrs now no cytoxin 2 liters of o2 5 mgs of predesone she walks with walker works out 3 days a week very active in church rough ride but GODS GRACE IS WITH US

2015/04/21

bob covey said:

got BOOP book today wife is almost done reading it allready i thought it would help her but it made her sad and depressed EVERYONE made out better than her shes SOOOOO tired of the predesone and hose up her nose 8 yrs is a long time ANY WISDOM BROTHER PEACE AND LOVE BOB COVEY

2015/04/21

Carmela said:

I wish i knew about your book 20 months ago. I found it is very helpful and comprehensive and easy to read.
I was diagnosed with COP on July 2013 after an open lung biopsy. I was diagnosed with silent aspiration as well. I was unresponsive to 30mg of prednisone. I underwent the Nissen Funduplication prior the cyclophosphamide IV started. Initially my sats dropped with minimal exertion to 72% and HR 155. I was on home oxygen and stopped it after the 5th dosage of cyclo. 8 months after my COP diagnosis i found a rheumatologist who diagnosed me with Amyopatic Dermatomyositis and SS the antigens KU and SSA were positive. initially the ANA was 2700 speckle patter and the rheumatoid factor +ve. I was treated with moxifloxacin IV for chlamidia pneumonia as well ( i never was exposed to birds but i may got the infection from a patient of mine, 40% of my patient load were respiratory). followed by oral Klasid for 3 months.
even thought my diagnosis is ADM i developed muscle weakness. the typical pattern of DM.
Since i completed the IV cyclophosphamide i started umiram 150mg and gradually weaned the prednisone. currently i am on 7mg and aim to wean to 5 in the next 2 months.
my FEV1 and TLC are 50% (similar that when i fell unwell) but DLCO has improved from 31% to 58% to the surprise of my respiratory doctors and lab scientists.
my exercise capacity has improved from 10 meters with O2 , BORG 10/10 to able to walk 10000 steps per day. i was able to run 1 minute last week!. I lift weights and i practice functional exercises. i put 20 kilos on i have lost 10 and planing to lose 10 more.
I am positive and i never give up and my attitude has helped me to go through the difficult times. I am not able to work as a clinician any more as it is physical demanding (I am a physio) but i am back teaching only one hour MIPH.
the fatigue is one thing i found difficult to deal but i plan my days so i can rest and sleep as best as i can.
sorry for the long introduction. I read in the book you talk about the treatment with corticosteroid. which i am weaning and my doctor is planning to keep me on 5mg for long time. you mention umiran as well, medication I am taking.
My question is how long would you treat a patient with prednisone and umiran. considering the patient has not had any relapses but was initially unresponsive to cortisone initially.
thanks

2015/04/24

Gary Epler said:

Pleased to read your comments. I have been out of the country and not able to respond.

Kathie W: Continue to ask you doctor questions about the plan so that you understand what to expect. Best wishes for good health and success with management of the BOOP.

2015/04/24

Gary Epler said:

Bob Covey – pleased to hear that you wife read the BOOP book, it was not intended to make her sad … she has done remarkably well considering the severity of her lung illness. It has been going on so long and of such severity, that this may not be typical BOOP especially if there is scarring and honeycombing in the lung. Continue to ask her doctor questions about the diagnosis and the treatment plan. This will help you know what to expect and give your wife some control over the disease process. In the meantime, I was pleased to see that she continues her exercise program. Her church activities are also a great help. Good health to your wife and success with management of the lung disease process.

2015/04/24

Gary Epler said:

Camela – you described BOOP associated with a connective tissue disorder. This type of BOOP sometimes requires complex therapy and monitoring. Stay in contact with your doctors regarding amount and length of treatment. In the meantime, In the meantime, your positive thinking of being able to manage this process can be very helpful. I was pleased to hear about your improved exercise capacity and especially with your nutrition management. Eight hours of sleep, daily exercise, and eating the right foods can be helpful. A few minutes of alpha brainwave time through meditation can also be helpful. Best wishes for continued success.

2015/05/01

caroline lopez said:

My Daughter was diagnosed with BOOP in November 2014 .She had AML in 2010 and underwent a stem cell transplant at the age of 19. After a few bouts of what they thought was pneumonia over the last 5 years and a botched biopsy in 2010 she started having serious lung issues in the spring of last year and it took almost another 6 months after eliminating everything else the BOOP diagnosis was made.She went on BIPAP at night and from November until a few weeks ago was doing well maintaining normal (for her) O2 sats and not requiring oxygen.However she had a flare up a few weeks ago and her steroids were bumped up from 35mgs to 60mgs weaning down by 5 mgs every 5 days unfortunately when she went below 50mgs her symptoms returned.and is now on oxygen 24 hours. a day An Xay yesterday showed the BOOP is still there. Her steroids have been increased to 80mgs and we will wait to see how she responds. Her Doctor is a little puzzled i.e.: only one lung, why he can’t seem to get her down to a low steroid dose without a flare up.She tolerates the steroids very well with little side effects although I am worried about her bones, she is taking calcium supplements.She does also have some scarring in that lung some doctors that she has seen says that should not be an issue and there is loss of lung volume again in the right lung. The biopsy in 2010 was on that lung too and I am not unconvinced that the lung was damaged and this is all the result.Her Doctor is trying to refer her to a more specialized centre and has talked about a lung transplant. On top of all of this she in not American she was at university on an athletic scholarship when she came down with AML.She is not been fit to travel home and unfortunately has no insurance. She is caught between a rock and a hard place.!!!

2015/05/12

Judy said:

Hi, I had BOOP twice. The hardest part of BOOP is the withdrawal from prednisone. At 15 mg, that is when the adrenal glands have to start kicking in and they just do not want to. What my dr did was reduce my prednisone 2 days per week by 1 mg. The next week, she would add another day….and so on. I handled it much better. Speak to your dr about it.

2015/06/13

Kelly said:

I have not been officially diagnosed! My Pulmonary specialist saw me and said to take 30 mg for one week and 20 mg for one week and to come back to see him. Unfortunately he has not appts, so will see him in one month. The steroids have made a huge difference—-taking the 30 mg for two weeks. I am breathless when moving—like riding a bike or vacuming. When I am at rest am only slightly out of breath. But, when do you begin to taper down??? I am afraid to stay on 30 mgs for a whole month.

Also, the fatigue is shocking—-I just went grocery shopping and felt like I could not finish!! How long does the fatigue last?

2015/06/17

Gary Epler said:

Kelly – fatigue and shortness of breath may be due to BOOP, but these symptoms may also be related to other lung conditions. You need to see your lung doctor now to find out the response to treatment and confirm the diagnosis of BOOP.

I wish you good health.
Gary Epler

2015/06/17

Gary Epler said:

Judy – your comments are very helpful. Everyone’s adrenal glands seem to respond differently during the prednisone tapering phase. Some adrenals respond quickly and others take time. You and your doctor appear to have found the right approach.
Best wishes for good health.
Gary Epler

2015/06/18

Kelly said:

Yes, I have an appt for July 7. My doctor is very busy, live in a small town, so that is the best I can do right now. He lowered the dose of Prednisone to 20 mgs which I am supposed to take until I see him.

I am more out of breath on the 20 than the 30, but have started to move on again. I have started a health journal and am going to the gym every day again. It is embarrassing to be in spin class and be using the 1 to 5 gears instead of the 20 to 30, but possible. I am now a hang out in the back of the room exerciser. Yoga, Pilates, bike and weights. Everything is scaled down in my life right now, but I will not stop doing it.

My biggest concern is that when I do get out of breath—mostly form the bike—-it takes forever to get it back. I am trying calming breaths, but it does take time. The nurse told me that I cannot damage my lungs with exercise and that I should keep on going.

2015/07/13

Suzanne Crump said:

Dr.Epler: I was diagnosed withBOOP IN Nov 2013, underwent exploratory in Jan 2014 for definite diagnosis. My excellent DR and the very informative book you wrote, have helped me get to today. Exercise, finding right Prednisone dosage and having a determined attitude and supportive friends have helped heal me to this point. I am in on a decreasing 5 mg every third day. Doing quite well, thanks be to God!

2015/07/14

Dr. Epler said:

Suzanne Crump – great to hear from you. I’m very pleased to hear that you are taking 5 mg of prednisone every third day. This is a good sign. Your exercise program, determined attitude, and supportive friends are inspirational. Best wishes for continued success.
Gary Epler

2015/10/14

danielle said:

hello. I was diagnosed with cryptogenic organizing pneumonia dec. 2014. I was put on prednisone for 2months starting a 60mg. After the 2months, I only had 2 small spots left on the xray, so my doctor thought it would clear up on its own but didn’t. I ended up going back on prednisone for 5 more months, but symptoms came back under 20mg. So now im again taking prednisone for 2 more months. Is this normal? ive been dealing with this for almost a year. Ive never had any health issues before except a gluten allergy & contracting mono one week before the pneumonia started. thanks for your help

2015/10/14

Dr. Gary Epler said:

Danielle – Relapses of BOOP occur up to 25% of individuals, so a recurrence is not rare. One year of treatment is often sufficient to stop the BOOP. Stay in contact with your lung specialist and continue to ask questions about the treatment plan until you understand the answers. I wish you good health and success with the management of BOOP.
Gary Epler, Boston

.

2015/12/01

Judy said:

5 years ago I had BOOP. A year later, it came back and at that time, I was put on 100 mg of prednisone per day. Of course withdrawal was worse than the treatment. Right now the doctor is considering that it may have come back. I have been sick for a few weeks.I have a non productive cough, puffers (steroid and Ventolin) do not work, nor does a cough suppressant. I started 50 mg of prednisone per day on Saturday. What are the chances of getting BOOP a third time? How long should it take for improvement?
Any information is appreciated as you know this is not an easy time.

2015/12/09

Gary Epler said:

Hi Judy – BOOP sometimes recurs, and the BOOP may or may not require prednisone treatment. There are several causes of cough so it is important that a chest x-ray or chest CT scan be obtained, and the x-ray findings usually show the same x-ray pattern as during the first episode. If this is typical BOOP, there should be improvement of symptoms in a few days and resolution of the chest x-ray within a few weeks. Ask your lung doctor questions about the diagnosis and the treatment plan until you understand the answers. This will help you be in control of the process.

I wish you good health and success with management of the condition.

Gary R. Epler, M.D.
Boston

2016/01/12

Sheri said:

I was diagnosed with Boop/Cop Jan. 2013 after 2 months in and out of hospital with what they thought was double pneumonia, Had a lung biopsy to confirm BOOP, was started on 80 mg of prednizone, weaned off, and recently had to start back on 20 mg. but my lungs are very scared from this and I have to have 02 anytime I am up walking for any time. 8-10 liters. What are the chances of any improvement in my lungs. other than weight gain from being not as active with prednisone, and shortness of breath with any activity. I feel great. I hope I can go back to work and get my life back. I do thank God everyday that I am alive and doing as well as I am .
The doctors in my area have never met a BOOP patient, I think they are some what overwhelmed.

2016/01/20

Alisha said:

I was diagnosed with BOOP 5 years ago after being associated with an auto-immune disease. I was on prednisone and did pulmonary rehab, it worked. Lately I have been having a persistent cough that produces nothing. I try cough syrup but nothing seems to help. Have you heard any issues like this?

2016/01/22

Amanda said:

Hi Dr. Epler,
I am s/p 2 yrs from ASD closure in which they found Hodgkin’s mass, thus was pummeled by Bleomycin thereafter. I am about to enter into residency this year and can’t seem to get my BOOP under control. I also can’t seem to get my new pulmonologist to prescribe more than a single medrol dose-pak of 7 days to ‘treat’ my BOOP. And then he just wants to re-CT scan me. After all the PET/CTs when the chemo and now follow-ups, I do my best to stay away from radiation. I’ve asked around and without returning to Atlanta to my old pulm, everyone seems to think this guy is just fine. Do I keep re-scanning every two-three months, when I know and tell him my symptoms are the same? Or just return to another pulm?
Thank you in advance.

2016/01/26

Gary said:

Sheri – you said that you need oxygen and there is scarring in the lung. Typical BOOP is inflammation with no scaring. This may be atypical BOOP or the BOOP is secondary to anther lung scaring (fibrosis) lung disease. Ask your doctor questions about the diagnosis and the treatment plan until you understand the answers. This will help you understand the situation and help you manage the lung problem better.

I wish you good health and success with this lung condition.

Gary R. Epler, M.D.
Boston

2016/01/26

Gary Epler said:

Alisha – cough is usually caused by irritation of the airways either from an external source such as a postnasal drip or an allergic irritant; or from an internal source such as a virus causing adult bronchiolitis or an internal airway or lung disease. If the cough persists, check in with your doctor for tests that can help determine the diagnosis.

I wish you good health.

Gary R. Epler, M.D.
Boston

2016/01/26

Gary Epler said:

Amanda – first of all, you are an inspirational force in your positive approach to your lymphoma, assigning it a background role in your life instead of a controlling one.

Lymphoma-associated BOOP is an inflammatory response without fibrosis. This type of BOOP recurs with the same symptoms with each recurrence and may resolve without treatment – a mild BOOP reaction can be monitored clinically. Symptomatic moderate to severe BOOP will respond to the same dose of a short-course of cortiosteroid, i.e., BOOP does not become steroid resistant.

Discuss the x-ray/CT testing and treatment options with your pulmonary doctor until you develop an approach that you understand.

Although difficult during residency, a daily exercise program could be beneficial for overall well being.

Best wishes for good health and success with your professional career (The best in the world).

Gary R. Epler, M.D.
Boston

2016/05/17

Robin Berenholz said:

Hi Dr. Epler,
I have been looking for any information about a possible link between allergens and BOOP recurrence but have found none. I have had five episodes of BOOP in the last five years and each onset of symptoms started in May. The only reason I can imagine is pollen allergies and I wonder if this is something you’ve seen in other patients. If there are any studies you can point me to I’d appreciate it.

Thank you and wishing you well this beautiful spring.

2016/09/23

Gary Epler said:

This is an educational and information site about BOOP. Please share your comments.

2016/09/25

Kim said:

I an recovering from BOOP/COP for the second time. Both times I was placed in a ventilator. The first time I ended up needed a tracheotomy because I was on television vent for so long. I was in the hospital for 3 months. 30 of those days under deep sedation. I got out ot the hospital the 2nd time just two weeks ago. I was only on the vent for 8 days but my condition was bad. This time they treated me with a combination of prednisone and cytotoxicn. I am down to 200g prednisone and 50mg cytotoxicn each day. I am 40, my first occurance was when I was 39 so both happened within about a years time. This sickness scares tell hell out of me!

2016/09/30

Dr. Gary Epler said:

Kim – your have an unusual type of BOOP as this usually does not require ventilator management and usually does not recur after a year without medication. You appear to have a strong positive approach to this complex situation, which is very helpful. If possible, attend a pulmonary rehabilitation program and develop a daily exercise program when you can.

I wish you good health and success with this lung condition.

Gary R. Epler, M.D.
Boston

2016/10/19

Bev parks said:

How do I keep my oxygen levels above 92 so that I am able to fly to see my daughter? I have B.O.O.P and almost died at the beginning of the year. I commenced weaning off from predisilone in August this year and so far I have maintained my present level of health. I have a 65% lung capacity which is unlikely to change

2016/10/22

Satish tiwari said:

Sir i am satish tiwari from india
My father is now discharge from hospitl ..he is suffering from RA BOOP…

Is there any relapsing thread..pls help me out..no one is here who know about that desese..thank you..

2016/10/28

Dr. Gary Epler said:

Bev – pleased to hear that you have weaned off the prednisolone. Flying in a plane may decrease the oxygen saturation percentage by 5 to 10 percentage points. This is not an issue for people with normal oxygen levels. Ask your doctor about your oxygen saturation levels at rest and after walking or climbing stairs. If they are normal, you will be able to fly to see your daughter.
Gary R. Epler, M.D.
Boston

2016/10/28

Dr. Gary Epler said:

Satish – individuals with rheumatoid arthritis may develop BOOP. This form of BOOP often responds to prednisone or prednisolone treatment. The goal of the treatment is to use the lowest effective dose for the shortest length of time. Keep in contact with your father’s lung physician and continue to ask questions about the treatment plan. Information about BOOP is in the BOOP book or Dr. Epler’s articles (25 years of BOOP) for your doctor.

I wish your father good health and successful management of the BOOP.

Gary R. Epler, M.D.
Boston

2016/11/29

Hilary said:

In hospital DX with pneumonia in April, had been sick all thru March. I did not respond.In the hospital again in June and had bronchscopy and lung biopsy. DX with BOOP. I am extremely medication intolerant started the predisone at 40mg. We had to lower it quickly due to side effects.I slowly improved but never to pre-pneumonia state. I have had 3 setbacks/relapses of severe shortness of breath when upright and/or doing anything. At this time my scans look good, PFT’s are good and O2 is good. So why am I still struggling? Is it the BOOP? Or something else. I should note my neurologist DX with mitochondrial disease in May. Also I am still on 5 mg of predisone

2016/12/05

Dr. Gary Epler said:

Hi Hilary – you asked about being short of breath and you scans look good. If the chest x-ray and chest CT scans show normal lungs, the BOOP has resolved, and if you heart is good, the shortness of breath may be due to muscle conditioning. An exercise program can be beneficial – start slowly and work up to a daily program through your doctor’s plan or a pulmonary rehabilitation program. Continue to monitor the mitochondrial disease process as this may be associated with BOOP.

I wish you good health and success with your condition.

Gary R. Epler, M.D.
Boston

2016/12/11

Tonya said:

Back in Feb 2016 I had a CT scan done that showed several nodules on my right lung after I was dx with pneumonia. (I have a history of ARDS in 2003 that progressed very quickly and put me on a vent for 11 days at the age of 29. I made a complete recovery from that.) In comparing my previous CT scans the nodules were all new so we knew it was not scar tissue from previous pneumonia. I did also have slightly enlarged lymph nodes near my sternum. My pulmonologist ended up doing a scope where he biopsied my lymph nodes, scraped some nodules and washed my lung. I live in the Ohio river valley where Hystoplasmosis is common. Non of my bloodwork nor biopsies showed anything and I tested negative for they Hystomplasmosis. I had a followup CT done after 3 months and half of the nodules were gone. Now I am starting to wonder if it was BOOP. I did start off feeling pretty lousy before getting pneumonia dx. Skipping forward now to Nov 2016 and I had a dry just annoying cough periodically for about 2 weeks that I just attributed to some season allergies (we had unseasonably warm weather). I woke up not feeling well running a low grade fever and had body aches. Took Advil and went on with my day. By that night was chilled and about 2am had a friend take me to the hospital as I was running a 104 temp. Dr were able to bring the fever down, but did a chest xray and didn’t really show much but they also did a chest CT because I had told them sometimes my D Dimer bloodwork will be elevated. And this time it was. Fortunately there was no PE, but it did show pneumonia in my right lung. Since my fever was down to 99 they sent me home with a zpac and told me to come back if running a fever of 102. The next night I was back in the ER with again a 104 fever and was promptly admitted. My admitting dx was sepsis pneumonia due to the high fever and high heart rate from the illness. All of my bloodwork came back clear of infection but I was still on 2 IV antibiotics. I was admitted on a Fri and by Sun with a followup xray they said the pneumonia was now showing in my left lung. By Monday afternoon with no improvement from the antibiotics a consulting pulmonologist with my current one gave me a dx of BOOP. So the antibiotics were dc’d and i was started on 40 mg of prednisione. SAT’s walking the halls before that were 87%, after 1 dose (and several hours later) they were up to 92%! I was released the next day and continued on 40 mg only for 2 days and he then had me wean down 5 mg every day. I had my followup with the NP the day after my last dose and she was confused as to why I was weaned off already, but lungs etc sounded fine and I felt good. By the next day I was starting to notice a little shortness of breath and I blew it off. By Saturday my chest felt heavy again and it was obvious I was having issues again. I waited until Monday to call and the NP put me back on 20 mg of prednisone. By Thurs (just 3 days ago) I called because I was seeing no improvement. She called back on Fri and put me back up to 40 mg. I noticed yesterday that the weight was lifted but I am definitely still winded quickly. Could I really be given a BOOP dx without getting a biopsy? And what are the chances I had it bad earlier this year? After reading the above questions etc now I’m getting scared to what my future holds. I am currently taking 40 mg of prednisone and doing a symbicort inhaler. I did start to feel crummy Fri night to only realize I am getting a cold on top of all this other stuff so it isn’t helping for sure. What are your thoughts?

2016/12/11

Dr. Gary Epler said:

Tonya – some types of BOOP may respond to a short course of prednisone. Another disorder called chronic eosinophilic pneumonia (CEP) also responds dramatically to prednisone. In this situation, a chest CT scan can be helpful for diagnosis and for treatment decisions.

Ask your lung specialist questions about the diagnosis until you understand the answers, and then ask about the treatment plan until you understand the plan. This information will help you make decisions that are best for you and will help you be in charge of the situation.

Best wishes for good health and success with management of your lung condition.

Gary R. Epler, M.D.
Boston

2016/12/15

Katrina Quinn said:

My mum aged 76 has been diagnosed with boop, she is on warfarin for her heart (mitral valve replacement and leaky left lung). She was put on prednisone and pulmisone but has experienced light headedness and dizziness along with muscle fatigue that she sometimes knocks into things. She went back to the cardiovascular doctor who said her heart is okay (the GP said she was in mild heart failure) and that she must come off the cortisone and that the pulmonologist must find a suitable alternative to cortisone as it’s the cortisone that is causing these symptoms. She has been healthy and active up until August this year when she went into hospital with bronchitis and it was only recently that they diagnosed boop along with “something” in her lung, the pulmonologist said they cant do a biopsy as it will set her back to much. She is very depressed. Is there another alternative to cortisone that she can take. We reside in South Africa.

2017/01/01

Paula Collins said:

I have recently been diagnosed with COP. My question is this: I have heard that it is typically associated with an auto immune. Do they test for an auto immune or is that a diagnosis you back into with process of elimination. How often can you expect to have another flareup and do people with COP always have the lung reaction when they sick with something like the common cold? Thank you!

2017/01/05

Stephanie said:

My daughter just saw a pulmonologist who believes she has BOOP. He ordered a breathing test and chest cat scan to be done. She has been treated for pneumonia 3 times this year and he feels she was misdiagnosed. She just turned 25 yesterday. She was a 29 week preemie, with lung complications, pneumonia, RSV, pertussis, etc. but by the age of 2-3 she had out grown a lot of that, but was asthmatic and got URI easily, but were controlled until this year. Autoimmune DX also runs in my family. This past year she has had several episodes of SOB, fatique, wheezing, joint aches, etc. Just walking from the parking lot to the dr’s office, it took her about an hour to catch her breath. He gave her a new inhaler, symbicort, which has seemed to ease some of her symptoms. No steroid treatment has been started yet, but he said that was the treatment. My 2 questions are: Has there been a link to preemies and BOOP? and Is BOOP in the autoimmune family? Thank you

2017/01/19

Beth Corry said:

Hi Dr. Epler,
I was officially diagnosed with BOOP last May after a lung biopsy at MGH. I was on prednisone for approximately 2/12 months but had to taper because 3 small tumors needed to be removed from my bladder. I was diagnosed with non invasive bladder cancer in September of 2015. This was my second bladder TURBT. Before the cancer, I was an extremely active 50 year old female. Ran marathons, triathlon and half iron man events. My question is could this have something to do with my immune system vs environment? I have been running again but the BOOP is back and I’m on a lower dosage of prednisone). Thank you!

2017/01/21

David said:

Dr Epler,

My mother, who is 65 was diagnosed with COP. She is in amazing shape and is often mistaken for a 40 year old women. A dedicated gym rat, and amazingly healthy eater. She surived 52 weeks of chemo for Colon cancer in the late 90’s but this COP is pushing her limits. She is now taking Steroids but we have had no real response yet and it has been a week. I know a week is a short time but she feeling hope less. Do we have options beyond steroids? What questions can I ask the pulmonologist? Are steroids the only option? I am shocked to see this take down a more than healthy adult and I feel that attention needs to be focus on the the cause of COP. Thanks for this support group!

2017/01/27

Alisa said:

My son is 9 and was diagnosed with BOOP in the fall. He has had a kidney transplant and it has taken a while to get it under control. Is there anything you would recommend to build his lung health. Are your books supportive to young patients with this diagnosis, and in his condition? I am hopeful about his future and want to do as much as I can to help him.

2017/01/28

Dr. Gary Epler said:

Katrina – pleased to hear from South Africa. It can be helpful to ask your mum’s pulmonologist questions about the diagnosis of BOOP and if this is causing disabling symptoms. Ask questions until you understand the answers. If this is BOOP, an every other day dose of prednisone at the smallest amount possible can be effective treatment with less adverse effects. A positive approach can be helpful, encourage your mum to keep active and that the illness can be managed.

I wish you good health.
Gary R. Epler, M.D.
Boston

2017/01/28

Dr. Gary Epler said:

Paula – BOOP may be associated with the connective tissue disorders such as Lupus or rheumatoid arthritis. BOOP may also be associated with autoimmune disorders such as anti-phospholipid antibody syndrome (APAS). If BOOP is caused by one of these, they are diagnosed by blood tests, and not by process of elimination. There have been no reports of a cold causing BOOP flareup.

I wish you good health,
Gary R. Epler, M.D.
Boston

2017/01/28

Dr. Gary Epler said:

Stephanie,

BOOP will show up on the x-ray and chest CT scan. So you should have some answers by now. There is no link between BOOP and preemies. BOOP is inflammation of the lung and is not an autoimmune disease. BOOP may occur in individuals with BOOP, but it is from the underlying disorder.

I wish you good health and your daughter successful management of her lung condition.

Gary R. Epler, M.D.
Boston

2017/01/28

Dr. Gary Epler said:

Beth Curry,

You most likely have the BOOP book by now and have found the answers to most of your questions. There appears to be no environmental cause of your BOOP and unlikely do to immune system disorder. You can explore toxic exposures that you may have had and review your immunological tests you have had to confirm.

I’m pleased to hear about your marathon and triathlon events. Keep these up as much as you can. You can use the BAA three-event medley to get back in shape.

Best wises for continued success.

Gary R. Epler, M.D.
Boston

2017/01/28

Dr. Gary Epler said:

David,

Pleased to hear that your mother has been such an amazing active women. If she has typical BOOP, prednisone will begin to cause improvement in symptoms within a days to weeks. An every other day dosage schedule can help with adverse effects. An exercise program can also be helpful to limit the adverse effects from the prednisone.

Continue to ask her pulmonologist questions about the diagnosis and the management plan until you and your mother completely understand the answers. This will help make decisions that are best for her and put her in charge of the situation. A positive approach to the BOOP can be helpful, and continued exercise.

Good health to you and best wishes to your mother for successful management of her lung condition.

Gary R. Epler, M.D.
Boston

2017/01/28

Dr. Gary Epler said:

Alisa,

BOOP does occur among children especially after a kidney transplant. Fortunately, this type of BOOP almost always responds to treatment.

You can encourage your son to be as active as possible and maybe find a sport that he would enjoy or group activity. You can also help by keeping a positive approach to the situation knowing that there is always something that can be done to manage the situation.

Good health to you and best wishes for your son in managing his condition.

Gary R. Epler, M.D.
Boston

2017/02/08

Diane said:

Dr Epler,
I was diagnosed with undefined auto-immune at the same time they found BOOP in June 2010. I had been free of any issues related to the BOOP for years and it appears it is reoccurring now. I would have loved to had access to a blog of this type then but I am glad it is here now. From your other comments occurrence like this is not common?

Thank you

2017/02/09

Pam said:

I was diagnosed with COP in nov of 2015, 3 weeks in hospital. Have been on prednisone since. My pulm doc has tried to reduce it but have had relapse. Am now down to 20 mg per day. I have had many side effects. Also am still on 24/7 oxygen 4lt. Getting frustrated that it has not gone away yet. I have had no rehab am very tired everyday. Ps I am only 49. Do you think something else should be done?

Thanks

2017/02/09

Dr. Gary Epler said:

Diane – it is unusual for idiopathic (Unknown cause) BOOP to recur after being treated 7 years previously. It may be possible in individuals with underlying auto-immune condition. Ask your lung specialist about the diagnosis and plan until you understand the answers. This will help make decisions that are best for you. Auto immune-type BOOP should respond to treatment if needed.

I wish you good health and success with management of your lung condition.

Gary R. Epler, M.D.
Boston

2017/02/09

Dr. Gary Epler said:

Pam – typical BOOP usually responds to prednisone within a few weeks and resolves over a year. You have had the BOOP for two years and you require oxygen. This may not be typical BOOP and may be one of the interstitial pneumonias like nonspecific interstitial pneumonia (NSIP). Ask your lung specialist questions about the diagnosis and the plan until you understand the answers.

A lung rehabilitation program and an exercise program can be helpful.

I wish you success with you lung condition and good health.

Gary R. Epler, M.D.
Boston

2017/03/07

Gail said:

In 2014 I was diagnosed with stage 1 NSCLC. I had a open full thoractomy to remove the LLL. No chemo or radiation needed. CT scans every 6 months to monitor remaining nodules. In Dec. 2016 one of the nodules had doubled in size and a PET scan showed a SUV of 5.5. A CT guided needle biopsy showed no cancer cells but doctor said I had COP. I have had no symptoms at all of this and am concerned that there was an error in the biopsy and this may really be the cancer that has returned. Do you think this is a possibility? The doctor has ordered the CT scans to be done every 3 months now to monitor this mass. What is your opinion?

2017/03/09

Dr. Gary Epler said:

Gail – this situation is rare, but not unusual and everyone is unique.

A single, focal localized BOOP lesion can occur and surgical resection results in a cure. However, regarding lung cancer, BOOP or COP can be a companion process with lung cancer occurring next to or within the lung cancer at the same time.

Ask your lung specialist questions about the diagnosis of the nodule and the management options until you understand the answers. Then you will be able to make decisions that are best for you.

Best wishes for good health and successful management of this lung nodule.

Gary R. Epler, M.D.
Boston

2017/03/30

Michael G King said:

I was dx w/boop in 2010. My only remaining symptom is shortness pf breathe. I read above where you say boop doesn’t typically leave scarring.
Then why can’t I breathe better?

2017/04/09

Jean said:

I am 70 years old who had radiation therapy for breast cancer ending in August 2016. The radiation only touched a sliver of my right lung. In November I got very sick and had a chest X ray, CTscan and all kinds of blood work. The right lung was totally inflamed and the upper left lobe had similar findings. I was diagnosed with radiation induced hyper sensitive pnuemonitis and fibrosis. I was put on high doses of prednisone. I had a chest xray after a month and my lungs had cleared so the doctor had me taper off the prednisone during the next month. I recognized from my breathing that it had come back when I got off the prednisone. Of more concern to me I had excruciationg hip pain. An mri showed that I had a fractured pelvis, just a hairline one. My respirologist ordered an x-ray and it showed that my pneumonitis had come back worse than before in the upper left lobe which had had no radiation. I had a bronchioscopy which didn’t reveal anything else. Since I had very mild symptoms he kept me off the prednisone. After a month I had another chest xray and he said the pnuemonia had cleared in the upper lobe and moved further down. He then said I had COP/Boop.and would monitor me and see if it would resolve itself. I am to call him if I become ill and he will put me on prednisone , otherwise I will see him in eight weeks. My question is even though the symptoms are mild can it be doing harm to continue untreated? If it clears will it recur again?

2017/04/11

Dr. Gary Epler said:

Michael – if the chest x-ray is normal and the pulmonary function tests are normal. The shortness of breath is not from BOOP. If you have a healthy heart and a healthy weight, the shortness of breath may be from muscle conditioning. An exercise program may be helpful. Ask you doctor about the best program for you.

Best wishes for success with management of your shortness of breath.

Gary R. Epler, M.D.
Boston

2017/04/11

Dr. Gary Epler said:

Jean – post breast cancer radiation BOOP has now been extensively studied and may occur as frequently as 3% of women. The BOOP may occur outside of the radiation field and may be fleeting from one lung to the other. No treatment is usually given for women who have no respiratory symptoms or minimal symptoms. Prednisone is given for disabling symptoms. Your lung doctor appears to be giving you a wise course of action at this time.

Stay in contact with your doctor and ask questions about the diagnosis and management plan until you fully understand the answers. This will help you to know what to expect and put you in control.

Best wishes for continued success.

Gary R. Epler, M.D.
Boston

2017/04/17

Matt said:

Hello my mother has been diagnosed with boop. I am trying to find out who the foremost specialist is in the Los Angeles area. I am really quite desperate. She has been treated but recently it has relapsed and I really need to find the best way to treat her. I have left a message for doctor epler hoping he will call me so that I can help my mother.

2017/04/18

Dr. Gary Epler said:

Matt – it is not unusual for BOOP to recur once or even three or four times as the prednisone dosage level is decreased. Fortunately, BOOP will respond to a slightly higher level of prednisone during each relapse.

If the relapse occurs at less than 20 mg per day, this is a good sign and usually means that over time, months to years, the BOOP will eventual resolve.

If symptoms are severe and high doses of prednisone are required, this may not be typical BOOP. The diagnosis may be nonspecific interstitial pneumonia (NSIP) with secondary BOOP. NSIP has a different clinical course and slightly different management.

Have your mother ask her lung specialist questions about the diagnosis and treatment plan until she thoroughly understands the answers.

There are academic doctors at USC and UCLA that are familiar with recurrent BOOP.

I wish your mother successful management of the BOOP.

Gary R. Epler, M.D.
Boston

2017/04/19

Matt said:

Dr Epler:

Thank you for your reply. Currently my mother has been sedated and intubated with 75% oxegen to keep her oxygen saturation above 90%. Her ABG is around 64 now but was 50. I could really use your help. I am an only child and I am carrying this all trying my best to help my mother. Is there anyway possible that you could consult with these doctors? The pulmonologist has only seen about 10 cases in 23 years of practicing. I did discover the ucla interstitial lung disease center but I cannot set an appointment until June. I had not heard of NSIP and I am not even sure how to raise that prospect. Please I am just trying to save my mother’s life. Thank you, Matt. My email should be attached to this message and I have left my number at your clinic on Monday. I know this is an extreme request but I am desperate.

Leave a comment