COPD in 2016

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This blog post was written by Dr. Byron Thomashow, COPD Foundation Chairman of the Board.

The times are changing. All COPD is not the same and everyone with COPD should not be treated the same way. For over 50 years, we have known that some people with advanced COPD have increased survival when they use Oxygen. For over 20 years, we have known that there is an inherited form of COPD called alpha-1 antitrypsin deficiency that can be treated with intravenous therapy. Everyone with COPD should be tested for alpha-1.

“Dr. Byron Thomashow For over 10 years, we have known that a subset of people with upper lobe predominate emphysema can benefit from a surgical procedure called Lung Volume Reduction Surgery where the worst areas of emphysema are removed. In carefully selected patients, this procedure can improve quality of life, exercise capacity, and even survival, the first therapy since Oxygen shown to improve survival in advanced COPD. We are now developing less invasive approaches using a flexible tube called a bronchoscope which allows placement of valves or coils to perform lung volume reduction. Several of these devices have already been approved in Europe and will be evaluated here by the FDA in coming years.

Over the last decade we he have learned that there are people with COPD who are “frequent exacerbators”, who have two or more “flares of disease” a year and that they behave differently than those with COPD who are not “frequent exacerbators.” We now have a number of excellent medications that can treat these “frequent exacerbators” and reduce the “flares of disease.” We are learning that even this group can be better defined. We now know that those with a chronic bronchitic form of COPD with chronic cough and sputum who have frequent exacerbations could benefit from a daily oral pill. And more recently we are learning that “frequent exacerbators” with an elevated number of eosinophils (allergy blood cells) might well benefit from specific therapy, and new therapies for this subtype are already being studied.

You should talk to your health care provider about what type of COPD you have, whether you have more emphysema or more chronic bronchitis, whether you are a “frequent exacerbator” or not, and if you are a “frequent exacerbator” what your eosinophil count is. All COPD is not the same. All COPD should not be treated the same. That is what “personalized medicine” is all about, and that is the future.

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  • Thank you. "Personalized Medicine" is necessary. No two patients are the same. There are too many variables in life to think that one treatment is the same for all, just because it is the same diagnosis.. Thank you again.
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  • Dr. Thomashow you are my hero! I would not still be around if not for my LVRS. Thanks for everything! Will there be anymore Mets COPD days?

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  • What is the name of this daily oral Pill and how does it help?
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    • Cherokeeprayer, I believe the article is referring to a medication called Daliresp (roflumilast). It helps with flare ups (exacerbations) for those that have chronic bronchitis. If you have congestion and frequent flare ups you might want to talk to your pulmonologist about it.
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    • THANK YOU!
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    • GOOD EVENING Cherokeeprayer. Like Debbie is telling you it is DALIRESP. I have been on it for at least a year with no exacerbations . Very expensive (even with ins.) but will stay on it .Don't understand why medicare pts. can't get a break on meds . I go online every day & keep looking & looking & praying that some where i will find help paying for drugs. Hope you all get on DALIRESP it does help..CAROL
      plumeria1942@verzon.net
      Reply
  • It is good that the time are changing. Knowledge on so many topics is exploding, and we in the COPD community need to stay at the forefront of research and new opportunities! Thanks for sharing your insight, Byron.
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    • Thank You , I amnew to this `COPD FOUNDATION site & the only way i learn is by reading what others have to say or suggest. Sure didn't learn anything from my PULM. DOC or PCP. I lot 2 years of not knowing any thing!!! CAROL
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  • Everyone seems to assume that if you have COPD/emphysema you should be on oxygen. My husband has severe emphysema, is not on oxygen and never will be. Three lung specialists have told him this, but last week his GP finally explained the reason. He can take in oxygen okay, in fact his blood saturation is 97%, but he has difficulty breathing out, and this is because the alveoli are so badly damaged from smoking, that if he was given oxygen it would poison him. This is rarely explained, and I am wondering if anyone else on this website knows about it.
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    • Sure. It's got something to do with CO2. Does he use a bi-pap?
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    • Nj
      Read another article on this site that says that is "wrong news"...maybe in link "all about oxygen", please read. But if 97% (with oximeter?) probably doesn't need.

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  • I see my pulmonologist yearly and when I ask if there are new treatments for copd or new meds I could try he just says no they all work about the same and not much can help you. He gives me a open script for steroids and antibiotics that I can fill as needed. I flare almost monthly, mainly cause I push myself. I own a business and work everyday and am not on oxygen. I will push myself to accomplish goals even if I struggle and it takes longer. I have a background in medicine so I am comfortable taking care of myself but it would be nice to have support from a medical professional too. My primary doctor is the same as my pulmonologist just gives me steroids. I am really stubborn and a tough cookie with a mission here yet to complete so I plan on hanging around for a while longer despite a lack of care.
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  • my pulmonologist has not seen me in years. He was so disinterested he turned me over to the NP because I resisted daily prednisone due to my osteoporosis and the fact that I did not have a productive cough. The NP and I have worked through it for 14 years. The pulmo has kept quite busy with his sleep disorders clinic.
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  • GinaW….I am recently diagnosed moderate COPD. Saw pulmonologist the other day regarding dx from PFT. It will
    take many visits to get out of him what information I want to learn about my condition (I used up 40 min of a 15 min appt lol). Anyway, what you wrote it very interesting to me. I wanted to thank you for this information. Another topic to add to my growing list of questions for next visit to pulm doc. Thank you


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    • JeanAnn
      One thing you should definitely talk to your pulmonologist about is a regular exercise program. A good way to get started is pulmonary rehab.

      Good luck
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    • Clipper...I asked for referral to pulmonary rehab and he says I dont need it ??? I will say I am up to 3miles walking...3 mile bike rides and 15 min "jogging" in place. I would have liked the referral any way...for better education.
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    • If you can do that much on your own then I can see why your pulmo said that.

      You might want to add some strength training to your routine. With COPD it is generally recommended that we do strength training at least twice a week. I do weights of some kind 4-5 times a week. I go to a fitness center, which means I have access to equipment; TRX suspension training, various machines, dumbbells, and kellebells. I have worked with a couple of trainers, one was a physiologist as part of a level 3 pulmonary exercise program. That was all strength and stretching work. If you could find something like that it would be great.
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    • Hi again Clipper....I feel extremely fortunate that my COPD was diagnosed now (instead of finding out waaaaay later). It is moderate btw. I think the FEV1 is 62% and FEV1/FVC 67. The only symptoms I currently have are becoming SOB doing stairs and I cannot run or I will become SOB (yet I can job in place). This has been the case for probably 4 years and I ignored the SOB. I smoked for 35-40 until this diagnosis. As I said I am extremely fortunate and my hope is I can keep this thing under control for a very very very long time. I turned 62 today. My PCP mentioned having a lung scan since I was a smoker...I agreed...and here we are today with a diagnosis of COPD from a PFT. I am grateful he suggested the scan because I would not have gone to get it done on my own. I'd love to hear from you and others if I could possibly keep myself at this current level for the next even 15 years? I quit the smoking, getting in the exercise I mentioned and trying to eat well. Pulmonologist will not even prescribe antibiotics to keep on hand. He says I don't need them. I said...what if I have an exacerbation?? He blew me off with that question. Am I wrong to think I could have an exacerbation?? Not certain I am going to like this Pulmonologist. Granted I am extremely anxious being new to a dx of COPD but wish the pulmonologist could have been a bit more patient and understanding with me. Anyway....would love to hear from you and others if it is possible to maintain where I currently am with the COPD for a very very very long time. I know everyone is different so I will keep that in mind. (btw...lived in CT for 18 years...now here in Fl for the past 4 yrs.) Thanks for listening and for your advice on the strengthening exercises. I am going to join a community gym next week and get going on some strength training...I could use it !
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    • Hi JeanAnn
      Happy Birthday 🎊🎁🎂

      There is no way to know how long you can stay stable, there are so many factors. There is someone here that stabilized for I think it was 20 or more years. People here have been living with this disease for many years. Since you quit smoking and are exercising I would definitely be optimistic. I asked my pulmonologist ‘how long’ and she won’t answer. All she said to paraphrase: as long as you continue to exercise they way you do, I see no reason why you can’t maintain for a long time. My FEV1 is 28%. I have emphysema, I do not have chronic bronchitis. I am 65, I still work (programmer), I live independently in a small house. I get by.

      Not everyone has exacerbations let alone frequent exacerbations. The last one bad one I had was in 2013. A couple of times I have had a cold that I felt go into my chest. I call my primary doctor and in a day or two I have antibiotics. If I had frequent exacerbations, that would be different and I would work with my pulmonologist. I would talk to your primary care doctor about it. This way when you do get a cold you have a doctor that you can quickly get in to see.

      Hope that helps a bit.
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    • Thank you Clipper...so much to learn ! I guess I am over thinking the exacerbation thing. I thought I would need to see my pulmonologist ASAP....that ALL exacerbations require an IMMEDIATE visit to your pulmonologist. Just wish the pulmonologist would go in to a bit more detail with educating me. I'll see him again in June. I hope he is a little more compassionate. Thanks again Clipper
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    • Just to clarify a bit JeanAnn, I might of mislead you a bit. If you are having an exacerbation then it is important that you should see a doctor right away. Most likely you will need antibiotics and/or prednisone right away. The thing is, you may not have a true exacerbation for who knows how long. As I mentioned my last bad one was was back in 2013. So yes you do need to react to them but not everyone will experience bad or frequent exacerbations through their COPD life time. Have a plan so you know what to do but I wouldn’t necessarily assume that you will have problems requiring with a stockpile of z-packs at home. Some people do, but not all.

      Print out the action plan and bring it with you to the pulmonologist. Explain that you want to know what to do. Some pulmonologist are hard to get to, if that is the case bring your action plan to your primary doctor and work with them. If you are a frequent exacerbator then your pulmonologist needs to take care of it, not a primary doctor.

      We are not all the same, what we need varies from person to person and will vary over time. But we all need to know what to do when we see certain signs. That is why the action plan is important.


      Reply
    • This might also help

      The GOLD document defines an exacerbation as “an event in the natural course of the disease characterized by a change in the patient's baseline dyspnoea, cough, and/or sputum that is beyond normal day‐to‐day variations, is acute in onset, and may warrant a change in regular medication in a patient with underlying COPD” ...
      Reply
    • Hi ALL
      I am London UK born and bred 1st Exacerbation 2009 Diagnosed Stage 3 COPD [NOW 4] Hospitalised many times with exacerbations Diagnosed Stage 4 COPD in 2013 O2 24/7 Now holding steady with 24% FEV1 for past 3 years recommend EXERCISE with own treadmill and pedal machine I use my 12 commandments which I copied from JEAN-5 on INSPIRE... my advise to ALL --- COPD WILL NOT KILL >> NEGLIGENCE WILL
      and JEANANNE.... I recommend you ask here if in doubt about anything to do with COPD however trivial you may think it is as we are ALL learning together!!!

      Reply
    • JeanAnne
      I agree with all that clipper says and would just add one other thing and that is to copy ALL THE POSTS HERE and print out so as to hand to your pulmo at your next visit ...... it can only help you and you pulmo understand your concerns and disease OK??
      Be lucky

      Reply
    • JeanAnne
      I agree with all that clipper says and would just add one other thing and that is to copy ALL THE POSTS HERE on this tread and print out so as to hand to your pulmo at your next visit ...... it can only help you and you pulmo understand your own concerns about your disease OK??
      Be lucky
      Reply
    • Hey Clipper and SnoopyDoo...Thank you again. Clipper...don't know why I thought you were a CT State Captain lol.....that's why I wrote in an earlier post that I was from Connecticut. Apologies. Anyway....I tried to hand a printed out action plan (from COPD Foundation) to Pulmonologist..he didn't want to hear about it. He says "I am fine". What the hell ! I just don't think he is listening to me or has a desire to educate me. Example: When I saw him this week he sent in a script for Proventil HFA so I have this on hand. Insurance doesn't cover it but my drug formulary listed two alternatives. I phoned in the two alternatives to his office. I was shocked that it was he who called me back. He told me he would send in a script for one of the alternatives, Ventolin HFA and that it had to be worded as such. He did not send in the script as such. He sent it in for Albuterol and the script was denied again. While I had his ear I asked again about keeping an antibiotic on hand as well. He stated once again....I don't need it !! If I have an exacerbation call my PCP or him or go to the ER. Long story short...he said he may not be available at the drop of a hat. I get that.....I've worked in specialist offices for years !! He comes across as so condescending. The problem where I live is there aren't many pulmonologists around. I will see him again in June....keep asking questions....if I keep getting blown off then perhaps I will be able to transfer to one of his partners. I've worked in offices though also that if you are established with a particular physician and you decide you want to switch to another physician in the same practice....it is unacceptable !! Ugh.
      Reply
    • JeanAnn, generally, we do tell people to see a doc as soon as possible if you do get something respiratory. If your pulmo won't create an actin plan for you, ask to be transferred to someone who will at least talk with you about the red flags you should look for and let you know how to respond to them. If you haven't had an exacerbation, I can understand why your pulmo reacted the way he did, but I agree it was not a pro-active and definitely not helpful response. No one likes to feel like their health concerns were "blown off" by the doc!

      It's certainly possible for you to figure this out for yourself, however. You need to first know yourself at your best. So pay attention to what's difficult and how difficult it is. Pay attention to how much you cough, how much mucous you produce, when you get sob and how sob you get, know your exercise bests, etc. After my initial hospitalization in 2003, I began a major exercise program and once I had gotten to a place where I was happy with what I could do, my yardstick for whether I needed to get to my doc was if I couldn't do what I usually did in the gym two days in a row. That was my initial indication that something was wrong. He once diagnosed an exacerbation on the basis of my exercise knowledge and the fact that my blood sugar ran about 10 point higher than normal.....that was it. Nothing else.

      So know yourself really well and pay attention to everything. Don't be obsessive, just aware. Now my triggers are a little more normal: change in mucous color, cough, more sob, etc. The key to dealing with exacerbations is to not let them get bad before you see someone. If they get bad and you really get sick, that's when you can do more damage to your lungs and it's usually damage you can't recover from. Even when you catch them early, you sometimes get something that really takes you down, but if you're in good shape and catch it early, it probably won't be as bad and you'll recover quicker. I haven't had anything that required hospitalization since 2003 and I've maintained at the same stage since 2000.; almost 20 years.
      Reply
    • JeanAnn
      Keeping an antibiotic on hand is not something that we all do. It is not surprising that he doesn't want to give you a standing script. This is not a one size fits all disease. What is right for one is not necessarily right for everyone. COPD is often referred to as a heterogeneous disease with hard to define phenotypes and endotypes. We are all real different. It is also why personalized medicine is so important for us.

      It is unfortunate that he doesn't want to take the time to talk to you about it. Maybe its a time thing. As you know, most appointments are 15 mins. Pick your battles and having a standing script for antibiotics might not be one of them for you at this point.

      I was reading this earlier, if you can't fall asleep tonight you might want to give it a look over. https://www.atsjournals.org/doi/10.1513/AnnalsATS.201808-533MG

      Reply
    • Jean, Clipper and SnoopyDoo…….Thank you for all the advice ! It is truly appreciated...it really is. Jean, congratulations on maintaining since 2000 !! I will admit I am paranoid right now...this is all so new to me. I will monitor my exercise program, any cough, etc. Again, great advice !! I will copy and paste the link you provider Clipper. Thank you all ! There is so much to learn
      Reply

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