Why is there so little discussion here of the side effects and dangers of both short and long term from the use of inhalers or even long term oxygen therapy? For example, did any doctor tell you that the use of Spiriva Respimat doubles the risk of cardiac arrest? I had my worst flare up on the first day of use. And I have stopped using ipraproprium bromide (Atrovent/Berodual) because after a couple of uses I get feelings of extreme weakness accompanied… read more
@A MyCOPDTeam Member You wrote: "if i get mad my lungs open up as if i had little or no copd,so the muscles in lungs are capable of opening up,when i tell doc this he looks at me as if i am crazy, but there is something to it." I also think there is definitely something to it - in fact a whole dimension of understanding that has yet to be explored, studies and written about. For one thing, 'getting mad' is like the opposite of 'getting sad'. And the lungs were often thought of the seat of sadness, the place where it comes to weigh us down - and make our breathing heavy work too:( We also know of the strong association of COPD with 'depression' - a relatively new-fangled word for sadness or melancholia. You also mentioned adrenalin. Beta-agonist inhalers of course, artificially boost receptivity to adrenalin. Of course adrenalin can be felt in a bad way too - as anxiety and fear rather than anger. But getting 'mad' ain't necessarily bad, although I find that feeling happier for any reason also improves my breathing dramatically. On the other hand stress or worry of the even most minor sort on the other hand, has an immediate negative and bronchoconstricting effect on my lungs and breathing. As I see it - and experience it - there is not a single emotion or mood - or even trivial event in life that does not immediately affect our breathing in some way or another. Maybe people with COPD are more aware of and sensitive to this fact. But if so, this awareness - like your awareness of the positive effect of 'getting mad' - could be a great help. Then again, breathing does not take place just in an atmosphere of air molecules. It occurs in an 'atmospheric mood' - one which can alter at any time and according to the emotional, mental and also the environmental space and we find ourselves in - for example a part of town we feel uncomfortable in or a busy and claustrophobic supermarket. Expanding and improving the entire 'atmospheric mood' or 'atmospheric sphere' of our breathing means a lot more than just quitting smoking or using air purifiers!!!
@A MyCOPDTeam Member When you refer to "clinical trials" what sort of trials are you referring to? Those conducted by the pharmaceutical companies? Those conducted independently? Those conducted pre-marketing or post-marketing? Short-tern or long-term? Do you look at the latest meta-studies based on comparison of multiple trials, and taking account of (a) quite different trial methodologies and reporting criteria (b) degrees of possible bias? Some trials actually exclude certain types of adverse reaction from their reporting. That is why, for example it took a large, post-marketing meta study to show that a number of trials - including the manufacturer's own trial - of the safety of the Respimat device for delivery of tiotropium were flawed - and that there were serious dangers of overdosing from its use resulting in a doubled risk of cardiac arrest compared to the handihaler. It is simply incorrect to assert that "every negative thing that happened to anyone in the clinical trials of all meds are required to be listed as side effects". If this were true it would not have taken the pharma companies years and years of pressure and mounting new evidence to warn patients that benzodiazepines carried high risks of chronic dependency after only a very short period of use, or to admit in their patient information leaflets that antidepressants medications could cause suicidal ideation - or far worse. Unreported side effects are in fact very common, particularly in trials conducted by the drug manufacturers. You may be aware also that there is a significant different between prescribing information and warnings or contraindications available to doctors and those listed for patients. Those for doctors are far more detailed. And yet I personally have often been prescribed medications which are clearly contraindicated for people with certain other conditions - which my doctor didn't bother (or know enough) to ask me about before prescribing. And there are many patients who ignore such warnings in an information leaflet because they are not aware of having the conditions contraindicated for a specific drugs such as those used for inhalers. Personally speaking, I never cease to be bewildered by the appalling medical ignorance of doctors themselves and their lack of knowledge of the latest trials or meta studies. But another reason I raised the question I did is that I have also been shocked to read on this side of people simultaneously using half a dozen or more types of inhaler - often of a sort which any properly informed doctor should warn the patient NOT to use together (for example two types of beta-agonist or anticholinergic inhaler). I do not think that the role of a site like this one should be to smoothe over medical controversies and encourage blind faith in the expertise doctors. I suffer from several severe chronic illnesses and have needed surgery - and one occasion almost died - all because I trusted in medical expertise.
Just to say I do understand where you're coming from Jean:) Also the need to strike some sort of balance. But again, in my experience - and that of many others - it's not just a question of docs not being all knowing or making the occasional mistake, but being plain medically ignorant in ways I could give many examples of. As a result I myself now DO question or research anything a doctor tells me or recommends - and believe very strongly that others should be encouraged to do the same. In fact doing this type of research for others as well as myself is part of a counselling service I provide to help patients engage in more informed questioning of their doctors. As for the FDA, we all know that trialling information can and has been concealed from them - and that there is even a rotating door between its personnel and the financially-backed lobbyists of Big Pharma. On a more positive note, perhaps one service this and other sites like it could provide at no risk is simply a section that offers short summaries of significant research findings or medical issues that people should be aware of. PS under my author name (Peter Wilberg) I have published several books on the philosophy and practice of medicine, one of which has been translated into two other languages. I also recommend Ivan Ilich's work (Medical Nemesis) and an excellent book called Body Matters by James Aho. There is also a great deal of new writing just come out on an entirely new field called respiratory philosophy. I recommend also checking out the essays of Havi Carel (a philosopher of medicine who herself suffers a serious respiratory disease) on www.academia.edu
I'm not trying to smooth over anything. The trials I was talking about were the clinical trials required by the FDA prior to approving a drug for use. These are always the manufacturer's clinical trials. The FDA requires that these clinical, and any clinical trial for that matter, be listed and included when the drug is up for approval. Studies that occur later are a different animal, and meta studies can occur only when there are enough research papers to actually do a study. These are clearly important and the examples of findings that changes dramatically the course or the med's use are legion.
I, too, wish docs were better informed regarding appropriate prescribing of meds. I can't tell you how many times I've told people on this board and others they were double dosing on this or that element of some of our combination meds because it was clear that the doc who prescribed them didn't know the combinations. Unfortunately, I and everyone who is not a doc or medical professional need to encourage people to go back to their docs because otherwise we run the risk of "practicing medicine without a license". And as soon as you scoff at that, I have seen that happen as a result of postings on a listserv.
Docs aren't all-knowing and they can all make mistakes. That's why people need to do a lot of their own research, as you have. By the same token, however, I don't want to scare people to the point where they don't believe anything a doc tells them and are paralyzed into doing nothing. That's even worse, I think.
Please understand that every negative thing that happened to anyone in the clinical trials of all meds are required to be listed as side effects of the med. There is no requirement that anyone prove that the med actually caused the effect. While I am sure that some flares do come perhaps as a result of the med, I think those are very few, and some could simply be coincidental.
As for O2, it's possible under very unusual circumstances for someone to get too much O2. However, every case of that happening that I know about has occurred in a hospital ER, under very difficult circumstances. It's not possible for that to happen with standard in-home O2 equipment. O2 is the ONLY medication that has been proven to prolong life in people with COPD.