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Late onset asthma confusion

Helenkitamu profile image
38 Replies

I am aged 50, I’ve never had any problems with my chest before. I had a chest infection in December. I was given antibiotics, steroids and salbutamol inhaler and told that there was a possibility I might have asthma. My symptoms improved with the treatment. But the tight chest and sporadic cough have persisted. I went back to the doctor because I didn’t feel like the salbutamol was doing anything to help.

I was then given a clenil preventer inhaler and told to continue using salbutamol as needed. As I constantly had a tight chest it was difficult to know when and how often to us the salbutamol. I didn’t feel that either inhaler helped.

I was then given a fostair inhaler as a preventer and told to continue using salbutamol as a reliever. My symptoms improved slightly for a few days but then returned along with my usual hayfever symptoms despite me starting to take antihistamine much earlier than I would normally to prevent me getting symptoms in case they were a trigger.

As a result I have just been told to use Fostair as both a preventer and a reliever. Again it is hard to know when to use it as a reliever because my chest is tight all the time. I have also just been prescribed montelukast.

I am struggling with the asthma diagnosis. I don’t seem to be responding to any of the treatments. I also struggle to identify the triggers because my symptoms are largely continuous. I always have a tight chest to varying degrees, an occasional mild cough throughout the day and quite often a hoarse voice too.

I feel like the possibility of asthma was raised and then never confirmed and that no one is hearing my concerns that the treatments to seem to be ineffective. Has anyone had a similar experience? Or has anyone got any advice? I am feeling at a loss with it all

38 Replies
Troilus profile image
Troilus

Hi Helen. I developed late onset asthma, but had difficulty getting it recognised, which might be the opposite to your problem, not sure. However, I have learned a thing or two along the way.Do you take your peak flow? If not it might be an idea to start. You can get a peak flow meter on prescription (not that I have ever been offered one😁) but you can pick one up on Amazon quite cheaply for a basic Wright meter.

Take you peak flow when you first get up and again a while after you have taken your inhalers.This should give you an idea of how much effect, if any, your inhaler is having. Sometimes we can think they are not doing anything, but in actual fact they are but they aren’t getting us up to where we should be. Make a note of these to discuss with your GP. If that sheds no light then there are other tests available.

The definitive test for asthma is spirometry. A lot of GP practices now offer this, but it was put on hold during covid. Might still be worth asking about it or a referral for full PFT at your local hospital?

One thing comes to mind - could your chest infection have been covid? I only ask because there have been a few people posting here and on the BFL site who are experiencing asthma like symptoms after infection.

I hope you manage to get sorted. 😁

Helenkitamu profile image
Helenkitamu in reply to Troilus

Thank you, I will get a peak flow meter - it will be good to see what difference the inhaler is making. I have been told the spirometer is still not back in use

I had several Covid tests at the time that were all negative but who knows!

nmcv13 profile image
nmcv13

Hi Helen, I started coughing at 50 which eventually led to an asthma diagnosis. I had the spirometry test with a practice nurse to confirm. I am now on Fostair, montelukast and fexofendine, with salbutamol as a reliever, which controls me quite well. I have also just had Qvar added for exacerbations. You need to get an asthma management plan which will detail when to act on worsening symptoms and relates this to your personal best peak flow. I found the asthma specialist nurses at asthma uk so very helpful and I’m sure they would help you with gaining more knowledge to get better treatment that means your chest no longer feels tight. I’d also recommend using a spacer for inhalers as this will improve delivery of the drug to your lungs. It’s really important to rinse your mouth afterwards, not doing this may be causing the voice issues. I’d also recommend asking for the easi-breathe salbutamol inhalers - they do make it so much easier to use. I know this is a difficult time and it will take time to learn how to manage this but you will get there. Take care. Nicky

Helenkitamu profile image
Helenkitamu in reply to nmcv13

Thanks Nicky, your story sounds very similar to mine. It is reassuring to know I am not the only one and that you have managed to get your symptoms under control. It sounds like it is well worth giving Asthma uk a call too

nmcv13 profile image
nmcv13 in reply to Helenkitamu

I also relate to your comment below about so many drugs! I’ve purchased a prescription pre-payment certificate which saves me so much!

elanaoali profile image
elanaoali in reply to nmcv13

Defintely I have one and have 1 inhaler, monkelaust, antihistamine, nasal spray, acid reflux medication.

Helenkitamu profile image
Helenkitamu in reply to Helenkitamu

Hi Nicky, thanks for suggesting I speak to Asthma Uk. I gave them a call this morning. The person I spoke to was very thorough, reassuring and encouraging. It was so good to speak to someone who has the time to listen. I felt so much better about things afterwards

CraftyLego profile image
CraftyLego

Hi Helen, I am in a similar situation to you. I am 48 and started a chesty cough last June. I was given clenil modulate and ventolin which didn't help. Eventually at the end of January a GP decided I did have asthma. I'm now on Fostair 200 and Montelukast after having an exasperation. I'm still chesty. I use a spacer and have a peak flow monitor. I have just signed up with a Buteyko breathing practitioner to see if that reduces my symptoms.

Helenkitamu profile image
Helenkitamu in reply to CraftyLego

That does sound so similar! I am intrigued by the Buteyko breathing. I think one of things I am really struggling with is suddenly having to use so much medication. Which would be ok if I felt it was helping!

CraftyLego profile image
CraftyLego in reply to Helenkitamu

Yes I feel like that about the medication. I've had so many steroids that I'm now clinically vulnerable. It's a nightmare. You go from being fit and healthy to feeling really vulnerable and suffering with daily symptoms. My GP says that I might have to put up with the mucus. I'm not happy with that!

Helenkitamu profile image
Helenkitamu in reply to CraftyLego

Yes that is exactly it! It has really impacted my sense of self as I struggle to accept the diagnosis as well as cope with the symptoms. This doesn’t feel like me! I also struggle with the focus on my age. As someone who felt complete at ease turning 50 it has been quite shocking to find that doctors have the idea that I am now automatically over the hill! ‘Well you are 50…’ and ‘at your age…’ have been common phrases. It makes me feel more like I’m 100 🙈

CraftyLego profile image
CraftyLego in reply to Helenkitamu

Yes I have struggled to cope with the diagnosis and symptoms. It's the fact that they just except the symptoms and leave you to it with no guidance. My doctor's have given me very little lifestyle advice. They shouldn't be focusing on your age with the asthma.

Anarcala profile image
Anarcala

Hi Helen,

I too have late onset asthma. What you mentioned about the tight chest and hoarse throat sounds like silent reflux might be a factor. I developed this condition as well, and it makes asthma worse. Perhaps read up on it and have a chat with your Dr if you think it might fit your symptoms?

Have patience. Finding the right balance of meds and getting an specialist diagnosis can take years. Especially in this climate. But a couple of yours from now you’ll be in a better place with your meds, and more comfortable with your chest.

Helenkitamu profile image
Helenkitamu

Thank you for the reassurance, it is so good to know that other people have similar experiences. I will look up the silent reflux too thanks

Mandevilla profile image
Mandevilla

I'm 47 and developed asthma following a severe chest infection 2 years ago (only got diagnosed in December as previous GPs kept telling me my breathing issues were due to stress about the pandemic!!!)

Are you tracking your peak flow? I sometimes don't feel my Ventolin reliever has done much to ease my symptoms, but when I check my peak flow before and after, it has made a huge difference. It took me a while to get the right level of maintenance inhaler, but after a couple of months on it, I was hardly needing to use the Ventolin at all.

Is it possible that one of your triggers may be the weather? If so, it's not surprising that your symptoms are fairly constant. I am much worse in rain, mist or fog, so pretty much all the time in winter! Or if you live in a damp house, that might explain why you constantly have symptoms?

Helenkitamu profile image
Helenkitamu in reply to Mandevilla

Thank you, I am going to start tracking my peak flow. I think it would really help if I could actually see how much difference if any the inhaler makes. I feel completely in the dark about what my triggers are. I have been keeping a diary but haven’t seen a pattern developing. So it might be worth me recording the weather too. Thanks for the suggestion

Mandevilla profile image
Mandevilla in reply to Helenkitamu

I kept a detailed diary for 2 months, monitoring my peak flow 4 times a day and recording what I ate, what activities I did and what the weather was doing, and it really helped me work out what was going on. Looking at it on paper can help you spot a pattern that you didn't realise was there. It would also be worth noting how you are feeling in case stress is a trigger.

Bella-Bestia profile image
Bella-Bestia

Hi,

Like the others I was diagnosed (aged 58) with late onset asthma following a most awful chest infection which included an emergency hospital visit. At that time I was given steroids and antibiotics, then time…

I went back to the GP as I felt my chest tight and couldn’t breathe out to the degree I previously could prior to the chest infection.

After a trial of clenil, I wasn’t convinced it was helping so my GP felt it was better to have me assessed at a respiratory clinic. There I was diagnosed with asthma.

I was prescribed other meds and even after a time I still felt my chest tight and I lacked the ability to breathe out fully. (That’s how it felt like to me. )

Anyway it took a long time, included more steroids, increased inhaler…. but eventually I reached a stage where my chest settled down and I can now breathe out fully.

What I am trying to suggest is that it can take a long time for things to settle down and you reach a stage where your body has the optimum treatment to settle down your inflammation from the initial cause of your asthma diagnosis journey. That’s been my experience…. and it took more than a year.

Now I am on meds which keep me stable, and much less than was needed initially to settle things down.

I hope this helps. It was difficult for me to get my head round it, and live and work out my personal journey and triggers.

I wanted it to happen sooner and worried at one point that I was always going to struggle with my breathing!

I found the AsthmaUK nurses and the website very helpful. That’s when I discovered this forum. Another very helpful place.

I hope that my story gives you hope.

I wish you well.

Take care,

Bella-Bestia

Helenkitamu profile image
Helenkitamu in reply to Bella-Bestia

Thank you for sharing your story Bella it is so reassuring to read that you got the symptoms under control eventually. I have also felt worries that I might never breathe properly. I think I am going to have to try to be more patient with myself and the process

Dashster profile image
Dashster

Hello Helen,I was diagnosed recently aged 69. It took 4yrs for my doctor to refer me to a hospital consultant and then only after paying £120 for a private spirometry test and presenting the result to my G P. I am now taking Fostair 2 puffs twice daily, Spiriva Respimat 2 puffs once a day and montelukast every evening. Things have improved so keep questioning your doctor and good luck

elanaoali profile image
elanaoali in reply to Dashster

Please take heart my asthma got much worse in november 2017 and I was on a long course of predisolone steroid tablets and tried a few inhalers til I found one that work. I was blessed with a very good asthma nurse of 20 years experience. I was on seretide but I had another bad time on Oct/November 19 when I ended up with a consultant. He did all the test to confirm my asthma and IG test to see what I was allergic too. (dust mite poo). My GP put me on Fostair 200/6 and its kept me in the most part really well. I have still had flare ups due to colds and after effects of Covid. These last two years most of us have avoided lots of germs so stayed very well.I hope and pray you asthma get under control soon.

Dashster profile image
Dashster in reply to elanaoali

Many thanks for your reply

Helenkitamu profile image
Helenkitamu in reply to elanaoali

Thank you, it is good to hear how helpful your asthma nurse is. I have only ever spoken to mine over the phone. She always seems quite rushed and a bit impatient with my lack of understanding

Helenkitamu profile image
Helenkitamu in reply to Dashster

I will thank you for your encouragement

Jock-salmon profile image
Jock-salmon

I had a similar experience to you, starting in 2017 when I had a nasty virus. I was super fit at that time, climbing hills, walking long distance regularly, with twice weekly boxing training. The cough and breathing issues didn't go away despite inhalers, 3 courses of anti-biotics and numerous courses of prednisolone.

I had asthma as a child. What I have now is different. The cough was productive and could be so violent I would have to sit down or fall over.

I kept attending Consultant appts, GP, Respiratory Nurse, etc. No improvement. My peak flows were all over the place but never higher than 450-460, Sats around 90-95%.

When we hit lock-downI was classified as a Shielder. In early April 2020, I had a chest infection? / further virus / flare?? The symptoms mimicked the 2017 virus and they lingered for weeks. In August 2020, my GP prescribed Anoro Ellipta inhaler as he said there was a possibility of COPD.

I tried it for a week and every time I took it, it felt like a belt around my chest severly constricting my breathing. Peak flows around 400, Sats below 90%.

So I stopped taking it. Peak flows went up to 440-460.

Before I say any more I must emphasise I am not in any way suggesting you follow this as a treatment plan. I stopped taking my Relvar and consulted a herbalist as I had started taking Helix Hedera and Boswellia Serrata capsules. These seemed to improve my breathing and dramatically reduced my cough. Anyone considering using herbal treatments should always consult their GP/ consultant.

I had a number of herbal preparations, my peak flows dropped initially but then gradually rose, over 5 or 6 weeks to their current level 550-570, Sats 97-99%.

I currently take daily Antihistamine, Mometazone nasal spray, and a range of herbs which is in the form of a hot infusion. If I feel chesty I add in Boswellia Seratta / Helix Hedera and I take Echinacea capsules when I feel I need them.

My GP, has been cautious in his support. I think he would prefer I just took the steroids. But he agrees my approach appears to have benefits and my condition is stable. I had taken Peak Flows x 3 daily for a number of months and charted these with the medication changes marked, which clearly showed evidence for my approach.

I am not saying to anyone to stop taking prescribed medication and just try some herbs. I am a registered nurse, albeit, semi-retired. I monitor my symptoms closely and I would re-start steroids if necessary. Family & friends have noticed a huge improvement in my symptoms.

I think I had long version of the virus I caught in 2017, with maybe a couple of chest infections or possibly a persistent, sub-acute chest infection complicated by hay fever and sinus problems. I don't actually know. I do know I feel better now, not fully well, yet, but close!

Helenkitamu profile image
Helenkitamu in reply to Jock-salmon

Thank you for sharing your story. It is really interesting to read about your journey. I would certainly be interested in researching the possibility of supplementing if not replacing some of the medication in the long term.

lakelover profile image
lakelover

Are you on aerosol or dry powder inhalers? When I was diagnosed, aged 59, they put me on aerosol inhalers & the 350 peak flow I had which the doctor wanted closer to 400 dropped like a stone to 250. The asthma nurse changed my inhalers to dry powder ones & my peak flow reached the hoped for 400 & then some. The propellant in the aerosol inhalers upsets some people & while it might not always be so drastic as it was for me it might cancel out the benefit the actual drug gives you. Just a thought!

Helenkitamu profile image
Helenkitamu in reply to lakelover

I am on the aerosol inhalers. My asthma nurse keeps telling me I have a preference for them. I’m not sure why as I have never tried a powder one. I might suggest I do at my next appointment l. Thank you

Nansheen profile image
Nansheen

Hi Helen, it may be menopause related. Iv looked into the relationship of menopause and lung issues and there is a link. Hope you feel better soon.

Helenkitamu profile image
Helenkitamu in reply to Nansheen

The menopause certainly seems to have a lot to answer for. It’s hard for me to know where I am on that journey because I had a hysterectomy 4 years ago. But it wouldn’t be surprising if it was a factor. Thanks for the suggestion

elanaoali profile image
elanaoali

Hi Helen I agree as my mild asthma got much worse in premenopause. I hope and pray you feel better soon

Helenkitamu profile image
Helenkitamu in reply to elanaoali

Thank you

Snickers72 profile image
Snickers72

Pulmonary Function testing, can become quite inaccurate when administered to the over 50 crowd - aging and predicted normal values according to research become at odds with each other - people are frequently misdiagnosed in the over 50 crowd at about a whopping 40% of the time when PFT is performed - and when static predicted normal values are used. Spirometry is less and less looked at as the definitive test for asthma - due to broad variabilities in the population - differences in testing equipment used, skill level of the tester - PLUS research conducted to test the accuracy of diagnoses has revealed very significant errors in disgnosis, and differences and constant changing of the predicted normal values charts used (there are a number of different ones reflecting different predicted values). Vocal Chord Dysfunction frequently mimics asthma/copd - so VCD needs to be looked investigated. Maintenance inhalers can take 6 weeks or even longer to bring the asthma to stability or considered managed. As we age, lungs normally lose functionality, and can become more reactive - which is why PFT predicted norms lose credibility. As we get older, we also tend to suffer more side effects from all of the medications we take - or do not respond as well to certain medications. Peak flow measurements only tell us so much. It can frequently take trying a number of different inhalers, to find the combination that works for you. Over using reliever (albuterol based inhalers) inhalers can lead to dependence on them - and also to declining use of the maintenance inhalers. How often to use the blue inhalers, requires a meaningful talk with an asthma nurse or doctor. Perhaps bumping up or down the maintenance inhalers is needed - rather than increasing the reliever inhalers.

Helenkitamu profile image
Helenkitamu in reply to Snickers72

Thank you, that is really interesting and helpful

Snickers72 profile image
Snickers72 in reply to Helenkitamu

I am a retired professional - and hope I have broadened your horizons! Knowledge provides power, and confidence!

Naturesvalley profile image
Naturesvalley

I to have late onset asthma. Was diagnosed last year. I had covid in 2020 and for over a year nobody knew why my chest was so bad. It was then found that covid had damaged my lungs. I also started on ventolin and clenil but had no effect. I am now taking fostair. I takes a while to work. I take ventolin when I need it. I Normally take 2 puffs when I need it.

Helenkitamu profile image
Helenkitamu in reply to Naturesvalley

Thank you, from all the responses it does sound like I need to be more patient. It really helps to hear that people have managed to eventually get their symptoms under control

Werwulf profile image
Werwulf

Sounds all so similar to what I'm going though I did have very mild asthma before the current problems.

healthunlocked.com/asthmalu...

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