Update on “continuing member”

[Janann25]

First of all, thank you for your comments and support. One thing I probably should have included in my post is that, although I was a member of this group during my late husband’s illness, I feel very much like a “new” member, in that I really need to be refreshed into the symptoms/progressions of this illness. So, any advice about general living would be much appreciated.

Secondly, since writing my post I have, just about an hour ago, managed to have a telephone consultation with a respiratory nurse. Unfortunately, I have changed my doctor’s practice about six months ago, so she has no personal recollection of me. Anyway, I explained to her that the Trelegy Ellipta she had prescribed during my last “telephone lung function test” hasn’t helped at all. She looked at my records and agreed that it’s now three years since I’ve had a proper lung function test, then explained that my records showed I already had moderate COPD 3 years ago. This really was a shock because I was only diagnosed with mild COPD six months before then so I’d obviously had a very rapid deterioration. Anyway, she suggested at first that I continue with the Trelegy, then said it might be a good idea to revert to Anoro, and then totally changed her mind and has decided to prescribe Spiriva again - I’m really having a job to keep up!! So, that’s the latest and I’ll let you know how I get on once I make the change. My medicines are delivered so it will be the end of the week before I get the Spiriva. In the meantime, should I continue with Trelegy, open an Anoro and use until the new one comes, or should I use nothing until the new one comes?

I’m sorry to ask what are probably very basic questions but, during the time of my husband’s illness, there was no Covid and so I was able to get advice from the doctor or the nurse much more easily.

It’s been such a shock to know that my condition is a lot worse than I’d thought and I just hope it doesn’t still deteriorate at this rate.

[Damon1864 Volunteer]

Hi Janann just keep a healthy lifestyle and exercise it's so nice to know you are staying on the site. You must do what you think would be best for you with your inhalers, as you know we are not allowed to give out any medical advice sorry. I hope you have a lovely day and take care 😊 Bernadette and Jack 🐕 xxxxxx

[Janann25 in reply to Damon1864]

Thank you. Jan

[jackdup]

I am glad you were able to get ahold of someone to at least try changing your inhaler. As Damon1864 pointed out we can’t really give out medical advice but being as how you were on Anoro before and it was one of the considerations today, and as you are now actually going to an inhaler that would be considered one step below Anoro, I think if it was me I would try the Anoro until your new prescription of Spiriva is delivered, that way you will have tried all three and should be able to get an idea which of the three was the most effective for you as we are all different. I am surprised she would not have given you Anoro if you were on it before and it helped you as it did. You are going from Trelegy, which contains three drugs, to Spiriva, which is only one drug and skipping Anoro which is a combination of two drugs. Is it possible for you to call her back and ask if it would be okay to use the Anoro you have left until your new prescription arrives on Friday?

As far as being moderate as opposed to mild it doesn’t mean you have had rapid deterioration without knowing your actual numbers and sometimes different doctors characterize it differently. Mild is 80%-100% and moderate is 50%-79% so a drop from 81% to 79% would move you from mild to moderate. In addition when I first saw a lung specialist I was at 67% which is well into the moderate range but when he sent his report to my GP he characterized me as having mild obstruction.

I really hope the change in medication helps, and if you do try the Anoro before you get the Spiriva then hopefully you will be able to assess which of the three is the most effective for you.

Here is a good example of what inhalers can do.

healthunlocked.com/blf/post...

[Kristicats]

Perhaps just continue with whatever is opened at the moment as you will probably get your Spiriva in 2 or 3 days.

It’s difficult to get a true range with just 2 spirometry readings as you could have had an infection brewing at one of the readings. Your next test should give you a better idea provided you are feeling well. There can be a vast variation in readings from one month to the next in spirometry alone I.e if you have a cold, infection etc. That’s why I use a hand held spirometry to check monthly so I have a better idea . I too read as if I’m moderate but have a letter from my consultant saying ‘mild’ obstruction 🤷‍♀️

All I can say through my own experience that keeping as active as possible is very important. I can tell the difference in my Fev1 since I’ve been lazy ( lazier) through lockdown and have put an extra 1.5 stone on. Just hope I can get back to where I was before covid. It’s easy to sit around and feel sorry for yourself so keep moving and as busy as you can it can definitely help improve things. Keep in touch I’m sure everyone would be interested in your journey. Cx

[Janann25]

Thank you for your advice. Unfortunately I’ve not had a REAL lung function test for three years - and the respiratory nurse told me there are no plans in my area to start them again in the foreseeable future! So, her decision to change the Anoro to Trelegy was based solely on my verbal description of my symptoms over the phone - not an ideal situation. So, I’ll just use the Anoro, which I was using until recently, then try the Spiriva once it’s delivered. I will definitely be keeping moving as much as possible because I live on my own so this is even more important to me.

[Bevvy in reply to Janann25]

To be fair to the nurse even with lung function tests it is often “trial and error “ to find an inhaler that works for a person. We are all so individual and what works well for one person might not work for someone else.Having said which there is a tendency to “throw” different inhalers at people without giving them a try for long enough! It can take 8-12 weeks for a new inhaler to be fully effective and really unless someone has a negative reaction to an inhaler it shouldn’t be changed so quickly.

I hope new inhaler works well for you but if not there are plenty of others to try.

[peege]

First dont panic, you may have only just tipped over to moderate therefore with the correct medication & exercise regime for you could well tip you back to the mild

[corriena]

Yes continue with your meds untill you get new meds. Unfortunatly its pritty much the same stuff eat a healthy diet, take plenty of exercise and avoid pouloted enviroments and anything that act's as a trigger for you. Keep your mouth coverd when out in the cold as cold air can make it more difficult to breath.

[Biddy_ALUK Partner British Lung Foundation]

Hi Janann, it sounds like you have a lot to think about after your consultation, you know you can always give us a call if you want to chat your concerns through with one of our experienced respiratory nurses.

The Helpline is open 9-5, Monday-Friday, on 03000 030 555

All the best, Helpline Team

[Janann25 in reply to Biddy_ALUK]

Thank you so much for the info on the Helpline - I hadn’t thought about that. I’ll definitely call them.

[jackdup]

Just curious if you did try the Anoro until you received the Spiriva and if so did your breathing improve? Did you get the Spiriva now and has it improved your breathing over the Trelegy, or if you did try the Anoro again did it improve over the Anoro?

[Janann25 in reply to jackdup]

So sorry, I thought I’d written a reply - I think I’m losing it🙄. I spoke to the BLF Helpline and got good advice. I’ll write a separate post so it will be seen by all those who kindly replied to me