Hello everyone, I’m a newbie to posting on here but I have followed some of the chats and everyone seems so friendly and knowledgeable, I wondered if I could pick your brains.
I had mild Covid in April 2020 and it left me with long covid, the worst effects of which for me are fatigue and shortness of breath. After many attempts to get a diagnosis of what is causing the SOB I have had since, I had an xray in June 2021 that showed hyperinflated lungs. The GP has diagnosed me with suspected COPD and prescribed salbutamol which I use when I have shortness of breath, that generally happens if I’m walking uphill, moreso in the cold. Bear in mind I used to be fairly active with walking and cycling – in fact I spent my birthday in 2019 walking up Helvellyn!
On the advice of the long covid assessor I was told to again request spirometry from my GP but she has said it is not available due to Covid and it is unlikely to return to surgeries in this area at all. So I am not able to get a diagnosis on what lung disorder I have. Instead she wants me to try Anoro Ellipta 55/22 as a preventer. Having read online the side effects I am very hesitant to commit to taking this every day as my symptoms have currently subsided plus I do respond well to the salbutamol. Whilst I appreciate many side effects are rare there are some common ones such as muscular pain, UTI’s, digestive problems etc that I really don’t want to get.
So my question is, do any of you use this inhaler, have you experienced side effects and how has it helped you. Any feedback would be appreciated.
Written by
bowiefangirl
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Hi and welcome. Although I'm sorry that you have long covid I think that you are fortunate to have a long covid assessor, support for people with long covid is non existent in some parts of the country. I have no experience of Anora Ellipta but I think that it may have been advised on the grounds that the benefits will outweigh the risks as is often the case with medication. Patient information leaflets can be scary things as they list absolutely everything now by way of side effects. The vast majority of people won't get these but it is often a case of try it and see. If you do have any adverse effects you can stop the inhaler, report the problems to your assessor who may then consider an alternative. Good luck and best wishes.
Thank you for your reply CDP016. Yes, I am fortunate to have spoken to a long covid assessor. I waited from June last year for a phone call with the assessor (there are no face to face appointments). She was the one pushing towards a spirometry but it was my gp who suggested the preventer inhaler and it just feels a bit of a hammer to crack a nut as the salbutamol does work when I need it and my symptoms are better because of the milder weather. I don't like to take any medication as I seem to be fairly sensitive to many things and just didn't want to add to my issues by suffering unnecessary side effects. It is a bit of a catch 22 really.
You don't have to use the inhaler if you don't want to. Maybe you could ask your doctor why he thinks you need it at some stage. It's certainly true that spirometry tests aren't being done by most GP practices at present. Hope you continue to improve.
Thanks CDPO16, that's very true! I think judging by what my GP said spirometry is unlikely to return to being a surgery based service and she mentioned some specialist central units that might be set up for it in the future...who knows - it all seems to be guesswork at the moment.
Hi bowiefangirl.I don’t post on here much as other members are way more knowledgeable than I, but I do read through the posts often.
I too was diagnosed with COPD about a year ago now. I have nothing to go on other than hyper-inflated lungs. I still have had no Spirometry. I was put on the Anoro Elipta at first but found it aggravated my sinuses and gave me some filthy headaches. I am prone to sinusitis but no-where near that frequently. It also seemed to affect my peeing (made it more difficult). My Practice nurse switched me to Spiolto Respimat and I think I am better on that.
I don’t know how good or bad I am doing overall because I have no benchmark. I struggle at night and if it is too hot/cold. Most days I think I am fairly okay but can run out of energy surprisingly fast.
I gave up smoking 11 months ago and expected to feel better because of that but actually feel worse. I guess that is the COPD and I would be in worse shape had I not quit?
Anyhoo, I digress.
I hope my experience of Anoro is of some use to you.
Thanks for replying Autumnman - it's frustrating isn't it not even knowing where we are on the scale of good to bad. Its great that you gave up smoking and in the long run it will have very positive effects on your health ... initially (for me the first two years after stopping but that was 15 years ago) it can make you feel pretty awful until your body gets used to it and you will be in better shape than you would have been.
Yep Sinus and UTI's were two of the prime common side effects listed so it's interesting to know that you had them - I have a nurse appointment in a couple of weeks so am contemplating trying it until then and seeing what happens.
Anyway your reply has been very helpful Autumnman so thank you again
I take Trelegy Ellipta. That has the same two constituents as Anoro Ellipta, at the same level plus another constituent. I have had no side effects whatsoever. I have had COPD for many years now.
I wasn't suggesting Ellipta as an option for you. Your GP decides the most appropriate medication for your individual circumstances. But Ellipta has the same ingredients as Anoro at the same dosage and I have had no side effects. Ellipta is prescribed usually for more advanced COPD, and has a steroid in it as well.
Well it's interesting to know it's prescribed for more advanced copd - as the gp said to me that "her money is on me having it mildly" I did wonder why she switched to a more powerful type of inhaler. Something for me to ask the nurse so thanks for highlighting that for me.
The Anoro is for milder COPD. The Ellipta is for more advanced COPD.
However Salbutamol is a reliever inhaler to be used for quick reaction to a period of breathlessness. Both Trelegy inhalers are maintenance inhalers to be taken each day.
Hi Davegt, I think the Trelegy Ellipta is the one which contains some steroid (for more advanced COPD)?.....The Anoro Ellipta is the one prescribed for milder COPD, and does not contain steroid - the Anoro is the one bowiefangirl was asking about.
I was started on the Anoro, but later 'moved up' to the Trelegy - they are both Ellipta, I think Ellipta is just the name for the type of inhaler (dry powder) rather than what medication it contains xx
Thanks DJS6, since then I've had an appointment with a respiratory nurse at the surgery and following our chat I've decided not to use it until I need it...which fortunately at the moment isn't the case 😀
I have been using Anoro Ellipta for a couple of years now with no sinus/UTI problems. There is also Relvar Ellipta and Trelegy Ellipta which both contain steroid which Anoro doesn’t.
Thank you pasquino, I've had a problem tracking a private test down in the south east and sadly their page has the same notice as others: "We have stopped this service temporarily during the Pandemic and will restart it as soon as it is over." But thank you for the link - I'll keep an eye on when they open up for those tests again.👍
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