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First Post - Inhaler side effects worth it?

Damacian profile image
16 Replies

I hope this message finds you all well. I'm new to this forum and eager to connect with others who may have experience or insights into managing asthma. Allow me to introduce myself.

I recently received some concerning news from my healthcare provider regarding my respiratory health. Despite having outgrown childhood asthma, it seems to have made an unexpected return. The trigger? A combination of acid reflux and exercising in cold weather has led to mild asthma symptoms resurfacing during my runs.

After undergoing a lung function test, my doctor prescribed Relvar Ellipta at a low dose to help manage my symptoms as he says its reversible. In the past, I only occasionally used Subatamol and beclometasone during my childhood asthma episodes, so this new medication feels like a significant step.

However, I find myself grappling with concerns about the potential side effects of Relvar Ellipta, particularly the increased risk of pneumonia, which is listed as 1 in 10. This statistic has me questioning whether the benefits of this medication truly outweigh the risks, especially considering my relatively mild asthma symptoms.

I still maintain an active lifestyle, running approximately 5 miles four to five times a week, which is important to me both physically and mentally. But I'm at a crossroads in terms of the best approach to managing my asthma moving forward.

Should I continue with Relvar Ellipta despite the risk of pneumonia, or would it be more prudent to revisit my childhood inhalers?

I would greatly appreciate any insights, experiences, or advice that you could offer on managing asthma and navigating the complexities of asthma medications.

Thank you all in advance for your time and assistance.

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Damacian profile image
Damacian
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16 Replies
Poobah profile image
Poobah

Welcome to the forum Damacian.

These combination inhalers containing inhaled steroids and a long acting bronchodilator are pretty much standard treatment for asthma. They come in two strengths, and your doctor will start you on the lower strength first to see how you respond over the first 8 weeks or so, as that's how long it will take the inhaled steroids to reach their full effectiveness. This leaves the stronger version for any necessary step up in treatment.

Ideally, the rescue inhaler (Salbutamol) is used only when necessary and the aim is to control the asthma symptoms with the prevention treatment so that Salbutamol becomes a twice a week or less event.

Most of us are on a form of combination inhaler and side effects vary from patient to patient and from inhaler to inhaler. You may want to check out other LABA combination inhalers to see if there's one that you would feel more comfortable trying. Unfortunately, none of them are side effect free and it's a matter of balancing controlled asthma and coping with any downside. But if pneumonia is the side effect you're most concerned about, there are other inhaler options for you to choose from.

But there's always the option of a steroid only inhaler, but ideally, Salbutamol shouldn't be a regular use inhaler, hence the move towards the long acting bronchodilator medication in combination inhalers. There's no reason why you can't have a combo inhaler with a rescue inhaler, unless your doctor has you on the MART (maintenance and rescue treatment) regime, where you take the one inhaler regularly but also as a rescue inhaler. This doesn't work for everyone.

To reduce some side effects, always rinse/gargle after inhaler use. Use a good fluoride toothpaste and never rinse/gargle after brushing. Wait at least 20 minutes before using mouthwash. Keep hydrated and eat a potassium rich diet. I'm sure others will have additional tips.

Combo inhalers available in UK: Symbicort, Fostair, DuoResp Spiromax, Flutiform, Seretide, Sirdupla. Which ever one you try, always review after 8 weeks or so, just so you and your doctor are satisfied that the treatment is working well for you. And if it's not, start again. Never hesitate to seek further treatment as required.

And you can always chat to one of the Asthma UK nurses on 0300 222 5800, Monday to Friday, office hours. They're extremely helpful and knowledgeable and happy to talk through your concerns.

All the best.

Mandevilla profile image
Mandevilla

If you're concerned about the side effects, you could always speak to your doctor about alternatives. I can understand why it might be worrying if this is the first inhaler you've been given as an adult. I'm on the same one, but only after a couple of steroid-only inhalers proved inadequate at managing my asthma, so while I'm not terribly happy with the various Relvar side effects, they're still better than how I was on the other inhalers.

Maybe ring the helpline to talk it through?

Also, it might be worth remembering that the side effects are what patients report experiencing while taking a medication and correlation does not equal causation. It might be that people whose asthma requires Relvar are already more prone to pneumonia, whereas those who are able to control their asthma on other inhalers are less prone.

peege profile image
peege

Excellent reply above.

I cannot add except to say this is similar to what happened to me some years ago. I was extremely fit at the time swimming 20 lengths or running before work - apart from hill climbing when I mistakenly thought something was wrong with my heart 🙄 (I've learnt self diagnosing isn't a good idea, I get it wrong too often!). For years using ventolin before exercise worked, (nowadays I have a Fostair on MART regime & have an extra puff before walks during winter). The cold air was also really bad for me & I regularly grew chest infections simply from being out in it.....perhaps because my resistance was low due to high stress at work.

Buying a Buff changed things, worn around the neck & pulled up over mouth n nose in the cold & damp prevented very cold air getting down the airways triggering my asthma. I found breathing in through the nose helpful too (the air is slightly warmed in my nasal passages before it hits my lower airways). Also I take supplements to improve my immune system thriving.

A good idea to call the helpline re inhaler advice (during UK office hours).

I must emphasise that we're all different in our asthma and triggers so what works for me may not work for others - ie I can absolutely never ever sleep with the window open whilst others may love to

Homely2 profile image
Homely2Administrator

Not much to add to the above, except think about where you run. In winter time I am much better exercising in a wood than in the open. The wood is much more of a constant temperature and you are sheltered from the cold winds. In summer I am better in the open.

Troilus profile image
Troilus

Some excellent replies above. All I can say is that if you are not comfortable taking it then it needs to be changed especially as there are so many alternatives. If a person is not happy with their meds they are less likely to be totally compliant.

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador

HI, I agree with what others have said about needing to find an inhaler that works for you. I also agree with calling the helpline to chat through your options.

Are you on Relvar 92/22? I've just looked up the label aimed at professionals (I'm not a healthcare professional but do work in a related field so I know how to read these things and the research). It looks like the risk of pneumonia is primarily for patients with COPD - Relvar is also licensed for COPD.

An increase in the incidence of pneumonia, including pneumonia requiring hospitalisation, has been observed in patients with COPD receiving inhaled corticosteroids. There is some evidence of an increased risk of pneumonia with increasing steroid dose but this has not been demonstrated conclusively across all studies.

There is no conclusive clinical evidence for intra-class differences in the magnitude of the pneumonia risk among inhaled corticosteroid products.

...

Risk factors for pneumonia in patients with COPD include current smoking, older age, low body mass index (BMI) and severe COPD.

I know from other work that this is a risk from inhaled steroids in general with COPD and that not all patients with COPD should be on inhaled steroids, partly due to this risk. For asthma it is different as the research to date suggests that all patients with asthma should be taking inhaled steroid and for asthma, it is risky to take a long-acting reliever without inhaled steroid.

The overall risk of pneumonia with Relvar 92/22 is listed in the up to date drug label I'm looking at as between 1-9% - including the patients with COPD. For asthma, the risk is much lower - I can't convert it to a percentage easily but it was 9 times more for COPD than asthma on the 92/22 dose, and honestly pretty low for asthma.

I'm not saying it isn't a risk, but I feel that it's probably a risk that you shouldn't prioritise when deciding on your treatment. For you, the safest thing is to get your asthma under control and use the inhaler or other treatment helps you to do that.

Damacian profile image
Damacian

Thank you so much for taking the time to consult with your consulate and share their insights. It's reassuring to know about the slight risk associated with these types of inhalers , particularly in the context of COPD. Your effort to gather this information is greatly appreciated. Regarding Revla, I'm curious if you've experienced any notable side effects or reactions? Your input would be invaluable. Thank you again for your help.

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador in reply to Damacian

HI, was this for me, or someone else? HealthUnlocked threads can make it hard to tell sometimes who a question is for! :)

If it was for me, I've never been on Relvar myself so can't comment - my post was just from the official information about it that all drugs are required to have. I will say that I have been on Fostair at a high dose for coming up to 8 years, and before that Symbicort at a high dose for about 4 years, and never had any pneumonia or issues from them. I do need to make sure I gargle with water and rinse out a few times after taking them to make sure I don't get oral thrush.

Mandevilla profile image
Mandevilla in reply to Damacian

I find that I have more voice issues - croakiness etc - on Relvar than my previous inhaler which I could use with a spacer. But it's a price I'm prepared to pay not to be bedridden every time it rains, which was my issue on the other inhalers I tried!

Patk1 profile image
Patk1

Welcome to the forum. The aluk helpline no is - 0300 222 5800

Gwalltarian profile image
Gwalltarian

You mentioned acid reflux and getting that controlled will make a major difference to your asthma symptoms.. Once the asthma symptoms are controlled- ie you can run without asthmatic issues - perhaps you could ask to try a low dose steroid only preventer inhaler - going back to the regime of your childhood - with salbutamol for occasional relief when needed.

Damacian profile image
Damacian in reply to Gwalltarian

Exactly. I want to go on the beclometasone preventer as this is what I knew as a child. However I suspect it may not be as powerful as the low dose Relvar. I am a bit healthy anxious and just can’t bring myself to accept the risk of pneumonia.

crille profile image
crille

Hi Damacian,

I have been on Relvar Ellipta 92/22 for about four years now, and I have never had any issues with this powder inhaler. My asthma is very well controlled. It is like I do not have any asthma, but my Neumologist says that I should continue using it. The asthma can flare up other vice. I never use my "rescue" inhaler. However, I keep one in the medicine drawer, just in case. My advice to you is that you speak to an asthma specialist to clarify the matter for you. Take care!

Heaven20 profile image
Heaven20

Hi, I stopped taking ellipta as I started getting cramps so my asthma nurse changed my prescription to Fostair which has caused the same reaction, she said everyone reacts differently to medications and its finding what's best to you so, yes best to voice your concerns. I'm hoping to revert back to brown preventer (beclametasone) which I didn't have any reactions.

Gareth57 profile image
Gareth57 in reply to Heaven20

Try eating bananas or other potassium rich foods to help combat cramping, it should be fairly easily controlled.

Gareth57 profile image
Gareth57

Hi, if your running is causing asthma symptoms try using your inhaler 20mins before setting off, I cycle rather than run and find this helps (unless I hit a steep incline when another dose helps at the top)

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