Following a research to see what caused the sudden decline in my breathing capacity I have been subjected to numerous visits and tests, pulmonary and cardiologists. Fortunately there are no problems with severe PAH or lung clots.
The advice was to encourage secondary prevention the use of preventers and LOW DOSE MORPHINE ... extract:
Opioids in patients with COPD and refractory dyspnea - PubMedhttps: //pubmed.ncbi.nlm.nih.gov ›
I understand that it is not passed by the NHS but it would be interesting to know if it is actually superior to the others.(assuming that one would afford the cost to have a real benefit)
Thanks for your help
Pasquino
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pasquino
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With the caveat that I’m not remotely medically qualified. Hopefully other people will be along to give their experiences of low dose morphine for breathlessness (it’s usually prescribed as the oral liquid (oramorph) here for that purpose), but I looked up the nebulised muscarinic - as you say, it’s not licensed in the UK, and the special pharmacy service (SPS) have it listed as no plans to develop it in the UK: there was a phase II study of it undertaken here, but it’s not been taken any further.
Looking at the phase III trial reports that lead to the FDA licensing it, based on my understanding, the idea that it’s ‘better’ really depends on how you measure and class improvement. The threshold for an inhaled medication to be deemed to show clinically significant improvement in fev1 is an increase of just 100ml, which in real terms wouldn’t even be a full percentage point change in someone’s percent predicted. In the trial, revefenacin was measured against a placebo group, and found to meet the 100ml or more threshold compared to that. I can’t currently see any studies offering direct comparisons with other available nebs (there are a couple available in the US for twice daily administration), or other ICS/LAMA/LABA inhaler combinations, and without that there’s no way to know how it measures up in terms of fev1 improvement against those. However, the trial study does suggest that it may be a better option for those with severe COPD due to better availability in the lungs: it’s not dependent on someone being able to co-ordinate taking an inhaler, or having to breathe particularly deeply, which can be an issue if people are very breathless. The other benefit over other drugs is that it is once a day. The paper conclusion in its entirety was:
‘Once-daily revefenacin 175 μg for nebulization was well tolerated and improved bronchodilation in patients with moderate to very severe COPD, including those with the markers of more severe disease, without evidence of cardiovascular toxicity. This novel bronchoselective LAMA offers patients with COPD who require or prefer nebulized therapy an effective, convenient once-daily treatment option with low risk of adverse effects.’
I think the key point I would be taking from that is that it’s convenient and safe for those that require or prefer nebulised therapy, and in the absence of direct comparison data against inhalers, that’s potentially the group where you could say it was ‘better’ rather than it being clinically superior for everyone. The full paper I’m quoting from is here: ncbi.nlm.nih.gov/pmc/articl...
The point is, I prefer something that can be taken in different dosages and something to use with the nebulizer can do that.
By doing so I will be able to adjust the quantity as needed, lowering the side effects, which cannot be done with common preventers.
Furthermore, it seems that this preventer has fewer side effects.
I say this because after having tried (with advantage) the anoro ellipta I noticed an increase in blood sugar which led me to a pre-diabetic state, as well as a noticeable increase in heart rate and blood pressure,
being a person who has never suffered from diabetes or hypertension you understand that I am a bit suspicious, in fact once I stopped the treatment the parameters returned to normal.
Moreover, almost all preventers give prostate problems and taking risks for a relative improvement in breathing does not seem wise to me.
A famous Italian politician said: thinking badly is a sin but it is often the truth ... the fact that it costs a lot makes me think that it is not too bad since it is still on the market and is not adopted by the NHS.
Leaving the choice only to those who can afford it would assume that the rich are stupid who pay a lot for something that all in all serves very little ... and whoever made money is anything but stupid, the same can be said of who he spends millions on researching new and more effective medicines.
You see , being on medication also for circulation problems I deal with very nasty side effects given by medicines , therefore for me the aim is to be happy with a minor benefit but with LESS side effects.
Hi Pasquino - following Charlie's well researched advice, I can only say that I have received Oromorph liquid that he refers to when in hospital with acute respiratory failure. I was too ill to know much of what was going on (in 2018) but when I returned home I had severe coughing spasm with breathlessness, and carried on using the Oromorph. It calms down spasm, and also the dreadful anxiety from not being able to breath well enough to cough up mucus. Ive found it excellent.
BUT I dont have refractory breathlessness so this was a very different situation to yours now. I think if I had such breathlessness and nothing else was working, I would be pleased to try morphine in some form. People can get anxious about morphine as it has associations with end of life pain control, but it is useful for lots of other things too, and I have quite a few friends who have been prescribed it in Oromorph liquid form and have found it helpful
I was prescribed oramorph for breathlessness and associated anxiety several years ago. I have found it helpful. I can take it as needed and adjust the dose as needed too. As time has gone on it's effect has lessened but there is still some benefit.
Hello, unfortunately I am highly allergic to morphine it puts me in a coma, sorry I cannot be of any help regarding morphine. Hope you soon feel a lot better.
I’ve been on a 1.25mg dose of Morphine Sulphate as and when required (maximum 4 times a day) to help with my breathing and I’ve found it a real benefit to myself.
I have Chrnonic Asthma, Severe Emphysema and LAM’s Disease (Lymphangioleiomyomatosis). Have been to,d I require a double lung transplant but due to the high dosage of steroids I’m on, I’m overweight and the transplant team won’t touch me until I’ve lost at least 6 stone (easier said that done)
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