I first joined this forum some 10 years ago when my husband became very ill with COPD plus various cardiac issues. He sadly passed away almost 6 years ago so my contact with the forum stopped. My own health was reasonable - just high BP - but was constantly stressed because of trying to help my husband, then dealing with the great big hole in my life with his passing.
Then, one year later, I was diagnosed with Polymyalgia Rheumatica which meant heavy steroid treatment for a couple of years, followed by slow reductions - but still taking the lower dose.
Then, almost four years ago I myself was diagnosed with mild COPD. I had another lung function test a year later but, like most people, my last two function tests have been “over the phone”. Still can’t get my head around how this could be physically possible but, hey how, that’s how things are at the moment!
So, at last I get to the real reason for joining you all again. It was obvious from the original investigations that any type of bronchodilator were of no help so I was prescribed Spiriva which was very effective. I was then prescribed Anoro Ellipta during a telephone conversation with the respiratory nurse then during my most recent “test” over the phone, was told that my description of my symptoms meant I should now use Trelegy Ellipta. Unfortunately, this hasn’t helped at all but, without an actual lung function test, I really don’t know whether my condition is far worse or whether it could be that this latest inhaler doesn’t suit me. So I’m wondering whether anyone else has had an experience of this.
I’m SO sorry about the long and rambling post but I felt some background info might be useful.
Thank you
Jan
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Janann25
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Welcome once again Jan. Sorry to hear about your dear husbands passing and also about your COPD diagnosis. Hard to believe your breathing problems can be discussed over the phone but there you go. Pete has his nebulised drugs plus Salamol inhaler when required and various meds including 10mg steroids per day. If Spiriva and Ellipta are powder based Pete can’t tolerate them so doesn’t use them. Hopefully someone else can help with your query. Just wanted to say hi.
Thank you for you reply - I never ever dreamed that I would need to join you all again. But I can remember how kind everyone was so I know I’ve done the right thing by turning here for help.
Hi Jan and welcome back to the site, so sorry to hear you now have COPD, but at least you do have some experience. I don't mean that in a nasty way at all I just don't know how to put it any better sorry. Of you are not doing well on your inhaler please get in touch with your GP or nurse and let them know, hopefully they will change it for you. Please keep posting and let us know how you are doing. Have a lovely day and take care 😊 Bernadette and Jack 🐕 xxxxxx
Thank you for your kind reply. And yes, I will definitely get myself organised for a long wait on the phone this week while I try to contact my doctor’s surgery!!
Hi and welcome back Jan. I haven't used Trelegy Ellipta but have had many inhalers that didn't help me at all. It is unfortunate that reviews and assessments are still being done over the telephone but I would get in touch with your nurse and tell her how you find the Trelegy. It is often a case of try it and see before finding an inhaler regime that works for the individual.
I cant tolerate any powder inhalers. Only Spiriva which is a small amount. They make me cough so never used them. It is impossible to do a Spirometry test over the phone so cant see the point. I have my Respiratory team who call and I am in constant touch with them whenever needed. Have not seen my GP for years as they dont seem to have the knowledge of COPD like my Consultant or team. Good luck and hope you manage to slow the progress of your condition. This can be achieved with excercise and common sense. Good luck xxSheila 💕🙌
My mother had Polymyalgia Rheumatica and like you was on steroids for a long time. She also had COPD and had Spiolta, which she was ok with. They then put her on Trelegy Ellipta. She did not get on well with this inhaler and was put back on Spiolta. It could be something to do with the amount of steroids that she had already had or maybe this inhaler just didn't suit her. (Trelegy Ellipta contains steroids) Either way, you need to let your surgery know.
It also seems a bit odd that they've used this inhaler on you, when you were only diagnosed as mild 4 years ago. Very difficult, with Covid to know if you've deteriorated, or not, but I have very severe emphysema and they haven't tried to put me on this inhaler, yet.
Thank you so much for your comments - which reinforce my own concerns at being prescribed this. I have been a singer for many years and still have good lung capacity with oxygen level of 97 - really makes me wonder why this was prescribed.
Unfortunately my GP told me last week that they have no idea when “real” lung function tests will re-start - and I’m really not happy with being put on this particular inhaler with only a phone conversation to decide this. It’s so strange that permitted f2f consultations are allowed in some places but not in others.
Hello Janann25. I was changed from Relvar Elipta to Trelegy just over a week ago. Because they said there's blood markers that showed Asthma. I also have a cough in a morning on getting up. So was given another tablet to dissolve in water and drink. So far neither have helped me at all but I will continue Because they are ringing me in a weeks time to see how I am getting on with the new medication. Hope you get some help And so sorry to hear about the loss of your Husband. Brian
First welcome back. Second sorry for the loss of your husband. Third sorry to hear you have been diagnosed with COPD. Fourth no need to apologize for rambling as you certainly weren’t rambling, but rather explaining your situation. Lastly 🙂 was Spiriva no longer working for you as you were prescribed Anoro? Just to let you know I had been on Spiriva and then was prescribed Anoro and my breathing was definitely not as good as it was on Spiriva so they changed me back to Spiriva. Anoro has two drugs in it while Spiriva is only one drug. I was then changed to Inspiolto which contains Spiriva and one other drug which I found was slightly better than Spiriva alone. It is very unfortunate that you cannot have a pulmonary function test to find your actual lung condition as diagnosing and prescribed over the phone may work okay for some things but don’t think this is one of them. Was your prescription changed again because you found Anoro was no longer effective? We’re you changed from Spiriva to Anoro for that same reason?
The other thing to consider is some of what you may have experienced with your breathing or what seems like a worsening of your symptoms may be a result of tapering off of steroids as steroids definitely help your breathing so some of what may seem as a decline in your lung function may be attributed to tapering off of steroids. I am not sure if you feel comfortable sharing your symptoms here but wondered how well you do with walking and doing household chores? How breathless do you get when you go for a walk and how far and how fast do you walk before getting breathless?
If you find Trelegy is not helping you or you are doing worse than you were on Anoro you should definitely contact whoever is prescribing your medication and see if you can either get switched back to Anoro or try a different inhaler.
Thank you for all your comments - and I’ll try to answer some of your questions. I can’t remember the actual circumstances regarding the change from Spiriva to Anoro but I know that it seemed to help. My biggest concern is that I seem to have deteriorated quickly. A year ago I could walk for an hour at a reasonable pace with only slight breathlessness but now I find the short walk to my local shop leaves me out of breath. As this has happened since the change to Trelegy Ellipta, it makes me question whether this particular inhaler has caused the change. I know from my last talk with the respiratory nurse that they are very busy but I’m now determined to try to speak to someone this week. Definitely a case of “watch this space”!
That is a very rapid deterioration indeed and definitely worth trying to talk to your nurse. I would certainly try to switch back to Anoro, at least for a period, to see if your breathing improves. Not every inhaler agrees with everyone and recall being changed to a different inhaler a couple of years ago and my breathing was worse on it so switched back.
Hello, just to say i have had spiriva for many years without any problems, Doctors asked me to change from spiriva but i always refuse, there are side effects but luckily these do not effect me, it can be very hard to find one that works so i dont know what to advise, i take one capsule at around 4p m and it helps at this time, best of luck and hope you find an answer soon.
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