No longer just reserved for severe pain control or to relieve end of life suffering, today a growing number of people with severe lung disease are using opiate medications to help quell their severe dyspnea . Well, you can now add to that list, a certain asthmatic marathon walker by the name of Steve.

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The decision to write a post about the use of opiates to treat my breathlessness was a tough one for me. As a responsible blogger I always worry about the possibility of sending the wrong message, especially when it comes to the use of certain treatments and/or medications. Let me be clear in stating, that I don’t advocate the use of opiates for asthmatics in general… the risk of respiratory depression is just too high. There are however, a small percentage of people who’s obstructive lung disease is so advanced, that nothing else works in quelling their breathlessness. Though opiates should only be used as a last resort in treating dyspnea, they do offer a degree of welcome symptom relief for people like me, so I think their use is important to talk about.

For the past year Ive been taking short acting opiates ( ie hydrocodone (Vicodin)and sometimes Dilaudid or Fentanyl) on an as-needed basis for bouts of prolonged moderate level breathlessness. When I say breathlessness, I’m not referring to the sudden shortness of breath that develops from acute bronchospasm or chest tightening you experience during an asthma flare, rather, I’m talking about the type of breathlessness that’s usually associated with air-trapping and chronically low lung function. There’s a huge difference, and thankfully most asthmatics will never experience this second category.

Starting next month ,they (my palliative care docs), wanna put me on a 30 day trial of continuous low dose methadone (Yes, the heroin withdrawal drug). They believe, that having a constant level of opiates in the bloodstream, is more effective in relieving dyspnea, and is better tolerated, than the shorter acting compounded drugs like vicodin (vicodin has tylenol in it).

My biggest concern about taking methadone or any of these morphine-like drugs, is how they will effect my ability to exercise. The experts claim that it might actually improve my exercise tolerance, because I wont “feel” as breathless. We’ll see about that.

Although physicians want to do all they can to help relieve dyspnea in their patients, fear of respiratory depression and criticism by colleagues has discouraged them from using opiates, even in treating those with end-stage disease. Thankfully, that attitude is slowly beginning to change. Opioids are very effective in relieving dyspnea, although the exact mechanism is not understood. Contrary to common belief, this effect does not result through inhibition of respiratory drive. Relief from the “work of breathing” is a function of steady-state opioid levels, much like steady-state opioid levels relieve pain. Inhibition of respiratory drive results primarily from rising opioid serum levels. Studies have demonstrated significant relief of dyspnea from opioids without significant effects on ventilation or pCO2 levels in common therapeutic doses.

For those of you who aren’t quite familiar the terminology, “dyspnea” is the subjective sensation of breathlessness or difficulty in breathing. It’s basically the experience of shortness of breath. Much like physical pain, we all perceive breathing discomfort differently. The way you perceive shortness of breath is probably different than the way I perceive it, and visa versa. Some of us have a higher tolerance for respiratory discomfort , and some lower. A million things can cause dyspnea, including chemical ,neurological and psychological abnormalities, but it’s usually a result of severe lung or heart problems. Dyspnea can me mild or severe. It can be acute ( abrupt ) or chronic ( long standing). Dyspnea is the main cause of suffering in lung disease patients, and is one of the top reasons why people seek emergency room care. Whatever the cause, dyspnea can be difficult to treat and can make your life miserable.

Why did they put ME on opiates in the first place? After all, I’m just a bad asthmatic , right?
Well, basically because we’ve tried everything else.
My lungs are so messed up , that even when my asthma is not flaring, I’m still short of breath. In fact, I’m pretty much short of breath to some degree … all the time. Because I’ve been this way for so long, for the most part it doesn’t bother me that much ….I’m used to it. But, there are other times when my dyspnea , for whatever reason, gets so out of control and so intense that it becomes overwhelming and unbearable. Left unchecked, the resulting stress, anxiety and increased work of breathing that can emerge from these bouts, can actually fuel a full blown asthma exacerbation, leading to an unwanted date with an endotracheal tube.

I still actively practice all the more common treatment strategies, including daily exercise and stress reduction therapy to better manage my dyspnea. And while these more traditional therapies have probably helped me live longer and cope better with my disease, they haven’t alleviated much of the actual suffering. It’s for this reason, and under the guidance of a palliative care specialist, that I choose to take opiate medications and sometimes ativan to manage my dyspnea.

Update: As of 2011 I stopped taking the methadone. Not because it didn’t help, but because I didn’t like the idea of becoming physically addicted to such a powerful drug. After staying on a low dose (25mg per day) for almost a year, I decided to stop taking the drug completely. Knowing that there could be very serious side effects of weaning off the drug too fast, I did it anyway. I don’t recommend doing this, but it worked for me.

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12 thoughts on “Opiates and Lung disease

  1. Danielle says:

    Glad you decided to approach the subject. I find that most topics, even if there are reasons not to talk about them (like stigma, or wanting to be a responsible blogger)are worth talking about and this will decrease the taboo-ness of the subject in the long run. Way to go.

    But I know what you mean about “responsible blogging” and not wanting to give people any wrong ideas about treatments that aren’t conventional. For example I get extremely nervous and hesitant when I post about my prednisone use.

    Posting about all the different things that doctors try on us, sometimes while grasping at straws, just goes to show what a diverse disease asthma is, and how diverse we all are. Not that this is necessarily a good thing, but it’s good to underline this fact.

    I have only used opiates once, following my tonsillectomy (just codeine), you might remember I had a severe asthma attack during that surgery. Anyway, the pain relief I was being administered did decrease my respiratory drive. I think I was probably also suppressing my cough because of the pain in my throat (or fear of the pain), but anyway all of these things combined led to some complications in the days following the surgery and I wasn’t clearing my secretions very effectively. When I switched to advil and finally got my antibiotics sorted out, I was much better off. One nurse even suggested I was “allergic” to codeine because I was asking for a neb shortly after I would be given codeine.

    If opiates can reduce the dyspnea for you, then I’m glad. I hope you’ll let us know how the new plan works for you, and if it has an effect either way on your excercise tolerance.

  2. Stephen says:

    PS… Im working on getting the word-wrap problem fixed in the comments section.

  3. marsh says:

    i can't believe that they give this stuff to you??? they look at me and sayNOPE YOU'LL FORGET TO BREATH sometimes i think they just like to see me in pain????? the strongest i get is tylenol and sometimes i sneak benyldril just to relax did i say that out load??? have a great day marsh

    1. cindy coffman says:

      you need a different doctor. I was on opiates for chonic pain went thru the struggle to get off them then after being diagnosed with COPD< Pulmonary arterial hypertension doctors insisted I go back on and so again my days are counting pills making sure I take only whats prescribed and it is alot easier to breathe and get thru the days….

      1. Ive never taken them for pain, Ive only used them for my breathing. To me , the side effects out weigh the benefits, so after being on them for 10 years, I weaned completely off. I still use nebulized dilaudid when I my breathing gets really bad.

        1. Hi Stephen,
          Here it is 2016 and I am curious to see if you take any opiates at this time and if so what and the dosage. I think I could be greatly helped by something like this for my COPD. When I had foot surgery I was prescribed Vicodin for the pain and was amazed how great my breathing was for that short period of time. Thanks for all you posts, Sally

          1. Hello, Yes, opiates can help quell breathlessness in some patients, but everyone reacts differently to these drugs. I only take vicodin on a PRN basis now, as I was having too many side effects when I was taking them everyday. Was also on nebulized morphine for a while, but it was hit or miss. Currently I get Fentanyl and/or Dilaudid for my breathing, but only when Im in the hospital. Take care!

  4. Susannah says:

    When Steve first told me about his being prescribed Ativan, I decided to discuss this with my lung docs who decided that seeing as it's not my stress or anxiety that causes my asthma, but my asthma that causes me such anxiety (!) I am now prescribed a tiny dose of Valium which seems to help me so I wont switch to Ativan just yet. The valium just helps me chill the minutest bit when I would otherwise be white knuckled by the SOB at times. I am not a tense or nervous person and tend to thrive off adrenaline so it was a catch 22 situation to try it.

    Actually their only directive was to tell somebody close to me if I am needing to take it-just in case I suffered respiratory depression.

    These kind of posts are eyeopening to those of us at the top end of the hardcore asthma scale. Thanks, Steve.

    Sus xx

  5. Rick Frea says:

    Thanks for writing this. I've been thinking about writing about this, and you just provided more wisdom on the topic than I could have provided. No, I don't take opiates. Yet I see it used a lot in hospitals, and not just for end of life breathlessness. Great post.

  6. Hi Danielle, Thanks for that thoughtful response.

    Yes, a lot of people are allergic to codeine for one reason or another, myself included.

    Thankfully, I haven\’t had a problem with respiratory depression while taking opiates.

  7. Colton says:

    I have read the comments above and pretty useful and effective but I’d still rather include this as an option. It’s still best to confirm this to my doctor. It’s better to make sure right. Thanks for posting. I’d really take this as an option.

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