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.

2015/04/21

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:

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.!!!

2015/06/13

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

2015/07/13

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

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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.

2016/01/26

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

2016/05/17

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

2016/10/22

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:

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

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:

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

2017/02/09

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:

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?

2017/04/11

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

2017/05/11

L. Romano said:

My 35 year old daughter was diagnosed with BOOP last year. She has been on steroids ever since and whenever the dosage is lowered to 30 she ends up in the hospital. In her most recent hospital stay the dosage was upped to 70. She is on 2 liters of oxygen at night. The doctors are suggesting an open chest lung biopsy. I am concerned about this procedure because ultimately the treatment would be the same. I am also concerned because my brother passed away from BOOP 20 years ago. Is an open chest lung biopsy necessary and is there a genetic component?

2017/05/12

Dr. Gary Epler said:

L Romano – this may not be typical primary BOOP, and may be nonspecific interstitial pneumonia (NSIP) or another interstitial lung process.

A genetic component of BOOP has not been reported although other types of interstitial lung diseases may have a genetic component.

I am not able to answer the question about an open chest lung biopsy. Have your daughter ask questions about the procedure and expected results until she understands the answers. She will be able to make the decision that is best for her.

I wish your daughter success with management of the respiratory condition.

Gary R. Epler, M.D.
Boston

2017/06/05

Hilary said:

can X-rays miss BOOP? For follow up which is better..X-ray or CT?

2017/06/30

Dr. Gary Epler said:

Hilary – During initial diagnosis, chest CT scans can be helpful. Chest x-rays are usually sufficient for follow-up, unless there is an unusual situation where chest CT scans may be needed.

I wish you good health and success with the BOOP.

Gary R. Epler, M.D.
Boston

2017/08/14

Marie said:

I was treated for double pneumonia in April and May of this year. After no progress, I had a lung biopsy and was diagnosed with BOOP/COP. I started in 40 mg of prednisone for six weeks then began tapering to 30. After five days, symptoms got worse so I went back to 40. I was able to taper to 35 for a week then to 30 now. I feel great so far. I see my doctor in two weeks. I should be at 20 mg by then

My question is how can I tell what is a recurrence and what are symptoms from lower prednisone? is there one thing I should lol for? I have shortness of breath when I climb a flight of stairs and my oxygen drops during exertion 85-88 but returns quickly (within 1minute) to 92-95 when I stop.

Also. I have to clear my throat constantly. I feel like there is always something in the back of my throat. I’m wondering if that’s the BOOP or something else.

2017/08/15

danielle breznicki said:

hello! I have had boop for 3 years now. I have no symptoms until I come completely off prednisone.my doctor said it could take a total of 4-5 years before this goes away, is that true?

2017/08/17

Dr. Gary Epler said:

Marie – the symptoms of recurrent BOOP are almost always the same symptoms that developed during the first episode.

Other things to do now for BOOP management include an exercise program cleared through your doctor and a healthy nutrition program for a healthy weight.

Best wishes for good health and management of your BOOP.

Gary R. Epler, M.D.
Boston

2017/08/17

Dr. Gary Epler said:

Danielle – pleased to hear that you have no symptoms when you are taking no prednisone. This is a good sign that the BOOP will eventually stop coming back. This may take one year or maybe two years. There have been rare situations for up to four to five years.

In the meantime, a daily exercise program and healthy nutrition can be helpful measures.

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

Gary R. Epler, M.D.
Boston

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