Sorry it’s a bit of a long story but I am feeling rather lost with what has happened. I was absolutely fine until November maybe odd tight chest and shortness of breath but this could have been anxiety. I am now on GINA step 4 and still poorly controlled. I am waiting to see the specialist, the Gp sent an urgent referral, through late January but my appointment isn’t until July. My peak flow isn’t the traditional saw tooth pattern. Though I have the saw tooth, it’s mainly reversed with my peak flow being worse in the evening than in the morning. GP with specialist interest in asthma thinks is probably asthma as I am so responsive to salbutamol but it’s not typical. I haven’t had covid and I routinely test twice a week, so it’s incredibly unlikely to be long covid.
It all started when I got bad cold / flu like bug in November, it wasn’t as bad as when I got Flu B a few years ago but I had a temperature, sore throat etc. I developed a cough and shortness of breath where I would struggle to speak in full sentences. After 3 weeks I contacted the GP and they prescribed a weeks course of amoxicillin and a salbutamol DPI and a referral for a chest x-ray if I didn’t improve in 5 days. This made minimal difference so GP wanted to see me face to face and listen to my chest. I had the odd wheeze but nothing spectacular. She diagnosed me with Bronchitis and prescribed 7 days of 40mg prednisilone and doxycycline.I improved with the steroids and antibiotics, I still coughed going out in the cold but could speak now in full sentences. I then got a sore throat on Christmas Eve and ended up very short of breath again on 27th December, I saw GP again and my chest was clear, I was apparently using accessory muscles to breathe and was tachycardic. She switched me to salbutamol through a spacer as I was struggling to use the DPI alongside more prednisilone and doxycycline and told if I got any worse or didn’t get any better in the next few hours to go to A&E . With a follow-up with a GP in a weeks time.
I got better quite quickly, still coughing but able to sleep and speak by the end of the week course of steroids and antibiotics.
The GP I saw beginning of January thought I was similar to the children who are happy wheezers as I was still a bit wheezy and short of breathe but it wasn’t bothering me. He started me,on Fostair 100/6 Nexthaler and asked me to keep a peak flow diary for a few weeks and book in to see the asthma nurse who could see if I was asthmatic but he wasn’t convinced I was asthmatic as I had been fine up until the bug I got.
I didn’t manage to see the asthma nurse as my peak flow dropped significantly when the weather turned cold, having a peak flow of 230 and again short of breath. I wasn’t sure what to do so I did an online consult and got a call from the GP surgery asking how was my breathing was and to call 999 if I was struggling to breath otherwise to come straight down. The GP listened to my chest and put me straight on a salbutamol nebuliser as my chest was too quiet and I was tachycardic. Literally after a few minutes I felt much better of the nebuliser. It was the GP with specialist interest in asthma who looked after me and GP could hear normal breath sounds after back to back nebs. She switched me over to the MDI fostair through my spacer, checked my technique and put me up 2 puffs twice a day alongside another course of steroids. With the instruction to come back for another neb if I felt worse before the steroids kicked in or to go to ED if they were shut.
The asthma nurse saw me 10 days later and switched me to MART with Fostair. My FeNo was 12 so not diagnostic for asthma. They want to redo it when I am off oral steroids for 6-8 weeks as it could have been falsely low due to the recent course of oral steroids.
GP has added In Esomeprazole as I certainly do have reflux and I feel much more comfortable. Despite this I have had another asthma attack that required oral steroids as peak flow sat at around 60% for 4 days without improvement despite max fostair. I was started on monteleukast nearly 3 weeks ago but I have had two asthma attacks and peak flow is down to 300 tonight (best is 520). I am hoping it will come back up as it did on Sunday.
I feel so lost and can’t seem to see and end to this, I am fed up that I can’t do what I want. I hate the tiredness and shortness of breath, I can’t walk from the car park to the department withouto getting out of breath. I am 35 years old. Has anyone else gone from not being asthmatic to a severe poorly controlled asthmatic.
Sorry for the long post.
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Lilly_the_unicorn
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sorry to hear you have been so poorly, my story is very similar to yours, I had a chest infection then that kick started a very long road of what felt like every respiratory type illness you could think of, not being able to barely walk due to simply not being able to breathe, I could barely hold a conversation, was in bed more than I was up, more antibiotics and steroids than u could count. It was awful so I really do feel your pain. That continued for a long time. I was eventually diagnosed with asthma, I had a few blips in getting the right treatment and hospital trips but now a number of years later I’m finally controlled. I’m currently on fostair 200/6, spiriva, ventolin, montelukast and lansoprazole and have a rescue pack as unfortunately when I get ill, it now goes straight to my chest and I drop fast. I have a lot of triggers but as I can recognise these now I find it a bit easier to manage unless the weather changes and my family and friends are aware of them all too which helps massively.
I know it’s hard to see at the moment but you will get to the point when you will be controlled and back to just doing you. Keep your chin up, I promise it does get better 😊
I am not a medic, but I have the feeling, asthma is not 1 size fits all disease, its more like cancer, with many, many individual variations. It can take time for the clinicians and you to find the right combination of treatment, with lifestyles tweaks. Don't lose heart, sometimes it helps to keep a diary, you may see patterns that help you to avoid triggers. I was going to say good luck, but its not luck you need, just determination, and don't despair.
Hi, it is possible/probable there are things setting off your attacks, while they do sometimes come out of nowhere often there is something that triggers an attack, and part of living with asthma is recognising what yours are, we are all different and what sets off one person may not set off another. Common ones are house dust, pollen, perfumes or aerosols or smoke. Perhaps try looking back at your episodes and see if there is anything in common with them, it could even be something you have eaten like a particular ingredient. If you find something try to avoid it or keep a salbutamol handy and use it at the first sign of a tight.
Good luck, you will get control but there will be trial and error on the way.
I wonder why the salbutamol mdi /fostair nexthaler ( is that a dpi?) was changed to mart with Fostair when you seem to respond so well to salbutamol - nebulisers and salbutamol mdi with spacer.
Reflux prior to Esomeprazole would definitely have been a major trigger and possibly needs an increased dosage to control it.
It has been exceptionally cold this winter - it sounds as though cold is another trigger for you.
It can take a number of weeks for montelukast to kick in - that should help with allergies. Have you tried antihistamines at all, ever? Are you aware of any allergies?
You responded to Doxycycline, oral steroids and a salbutamol (mdi ) inhaler with spacer, not to amoxicillin- which isn’t surprising as that can be useless in chest infections.
You say at the beginning that you used to get an occasional tight chest and breathlessness - possibly a panic attack but quite possibly asthma - so you haven’t actually gone from nothing to apparently major asthma symptoms which do seem to respond to some of the medication you’ve been given.
You test twice weekly for covid but you have had some covid like illnesses over the winter. I know from a number of events in my extended family that in a household of people with the same symptoms, at the same time, some tested positive for covid and others didn’t. So possibly you have actually had covid - which has upset the Apple cart for you - aggravated by the exceptionally cold weather, reflux and possibly other allergies.
I think that from what you say, you were responding quite well to salbutamol and fostair (?) and you are having difficulties on the Fostair Mart regime so perhaps you could ask to revert to salbutamol mdi with spacer as a reliever and Fostair (nexthaler?) preventer to see if that helps - or salbutamol mdi with a different steroid only mdi inhaler - you seem to react more positively to mdi than dpi inhalers and you react well to oral steroids and doxycycline. Good luck.
The Fostair Nexthaler is a dry powdered inhaler which I had initially had but I was switched to the MDI version of Fostair through a spacer. I was switched to Fostair MART as I was so responsive to steroids they hoped by getting the additional steroids when I used the reliever inhaler they might avoid me having to have another course of oral steroids. I do still have a salbutamol MDI which I use through a spacer which I generally use at night if I wake up with asthma symptoms.
I am the most useless person with DPI especially when I am short of breath.
Thank you, I will ask about if it is worth switching to a different inhaler when I see the asthma nurse in a couple of weeks.
It sounds like you are having such a bad time of it. I have read that people have had asthma triggered by an infection. Please someone correct me if this is wrong. The first time you were ill - I am shocked they didn't have you into the gp to listen to your chest! Shocking.If your peak flow is 60%, please always call the gp and don't wait to see if it improves. My gp told me that when peak flow is 40-60%, that is when they are worried. I call the gp when mine gets to 80% and they have me in to listen to my chest.
Hang in there and push for a diagnosis. Once you get it and the right medication, you will be ok. It took me a yeah and a half to get the right meds and doses for me but my asthma is controlled now.
I wonder if there is anything in your daily life that could, if you have asthma, be triggering it. Things like animals, aerosols, perfumes, dry air, mold? Removing a trigger will help you a lot. Your heart burn is an asthma trigger. This was something that plagued me for months! I didn't know it triggered asthma but if I have a had bout of heartburn, I sleep propped up and it stops my asthma being triggered.
Do you know when you are able to have the FeNo test again? I never actually had this!! Shocking isn't it.
All the best, hang in there and let us know how you get on.
Yes the first time I was poorly with my chest I had a telephone consultation. I am not sure that it was probably necessary as I was well in myself and I had only been coughing for 3 weeks. I was offered a face to face or telephone appointment.
I have been keeping a peak flow diary for the last 11 weeks, and certainly I have found triggers. Cold weather, especially doing things outside like gardening or going for a walk make it worse.
The FeNO is new at our GP surgery, they have only had it since mid January. Hopefully your Gp get it soon, ours are going to use it for diagnosis and treatment monitoring. Apparently it can help decide whether to step down your treatment if you have been stable for a while.
Sorry to hear that you’ve been suffering so long without a proper diagnosis. I also had a long journey a year earlier. I was surprised that you don’t seem to have had proper lung function tests and a hospital referral, unless I missed it. I went from pillar to post, twice told there was nothing wrong at A&E. Eventually, I paid for private lung function tests as the ones my GP had ordered never happened. The test results were dire and there was a big panic. I was terribly ill. My Feno (inflammation) test was through the roof and I got put on Fostair 200/6 and ciclesonide inhaler as well, and salbutamol. I had eosinophils in my lungs so badly they could be seen on a CT scan. A year later, I am on Benralizumab biologic which you are eligible for at some hospitals if you have 3 or 4 courses of oral steroids in a year, due to the long-term effects of steroids.
If you haven’t already been referred for lung function tests and to see a consultant, perhaps you should push for it. This was what made a difference for me eventually.
Morning Lily. Treatment can be trial & error in order to find the right combination of meds. I agree with Gwalltarian, in that you're not responding well to the MART without Salbutamol, so when new regimes don't work as expected, always go back to the prescriber to review your lack of progress and to try something new or return to the previous combination of meds. What suits one asthmatic doesn't necessarily suit another.
Definitely keep a diary of what you eat & drink, weather, activities, over the counter meds plus symptoms. It will help pin point any triggers. We can develop allergies and triggers in adulthood, unfortunately, and sometimes they're not obvious. Some asthma triggers can be seasonal, for instance, winter cold and pollutants from wood burning stoves can wreak havoc. But for others, spring pollens or a specific tree pollen (each tree has a specific pollen period) are the culprits. By July, & your referral appointment, you should have a decent record to help pinpoint any likely triggers.
Personally, I've experienced both an anaphylatic response to a new trigger (aspirin) and a much slower, but disabilataing reaction over time to a change in food (from cow's milk to soya milk). Despite having asthma for years, these triggers were new experiences.
And don't discount anything in your environment or in the workplace. The fact that your peakflow dips in the evening suggests a daytime trigger.
I have been keeping peak flow diaries for the last 11 weeks and the asthma nurse wants me to continue ideally until I see the respiration consultant. I will add in what I eat and drink. I do add the weather as I certainly find the cold weather is a bad trigger.
Hi, sorry to hear you've had such a rough time. I had a very similar situation to you although my was completely out of no where. So many changes of inhaler 6 courses of pred and antibiotics, even though no infection, but I was so desperate that I'd try anything, felt like I would never get it under control again. I even took a week off work, not something I do normally! It has taken 4/5 months but eventually I'm starting to see light at the end of the tunnel.
My own story is very similar to yours. I’ve always been asthmatic but barely noticed it until I caught Covid. This triggered uncontrollable asthma. I’ve had more antibiotics and steroids than I care to remember over this winter. So much so the doctors are concerned about my bones now. I was increased to fostair 100 then 200 and now I’m on Trimbow and montelukast. I still suffer from regular tightness. My wheeze can only be heard when the doctors check my chest, oxygen levels are always fine and my peak flow is better than it’s ever been 🤷🏼♀️. The respiratory specialist has said they are seeing lots of people who are developing asthmas or worsening of symptoms lately after bad colds etc. I unfortunately done have any solutions, but you are not alone! I completely understand your frustration at it all.
Hi Lilly, sorry to hear you’ve been so ill . Your experience in some ways sounds like mine. I had no previous history of asthma but did occasionally get wheezy for a couple of hours after exercising in the cold.
Then in January this year, in the space of 12 hours, I went from being fine to coughing, short of breath and crackling chest. After a few days of this not being controlled by salbutamol, I started oral prednisolone and ultimately ended up in hospital for a few days. I had a chest X-ray and CT scan where they picked up some consolidation and diagnosed pneumonia.
Long story short, I would be fine whilst taking oral steroids but each time I stopped, I would relapse and all the symptoms would return after a week to 2 weeks. At some points my peak flow would drop below 50% of my best reading. I managed to see a consultant through my work private health care and he took a blood test when I was 2 days into the 3rd course of steroids. He was checking for eosinophils and my level came back at 1.9 which he tells me is high. He could hear a mild wheeze (but my main symptom is cough, and SOB if severely uncontrolled) and he diagnosed eosinophilic asthma, and possibly eosinophilic pneumonia, but we have to wait and see for that one, possibly based on further CT scans.
He started me on Fostair 200/6 3 puffs twice a day and a tapered course of steroids which I finished a week ago. During the journey there were times I would just cry at how bad I felt, and not being able to see an end to it. Right now I feel fine, as eosinophilic disorders are very responsive to oral steroids, but I know I went downhill very quickly the last two times I relapsed within a couple of weeks after the steroids, so I’m worried it is going to happen again (although maybe not if the Fostair has kicked in)
If you’re responsive to oral steroids and relapse when off them, maybe it’s worth considering whether you have high eosinophil levels? Although steroids will bring these down too so you might have to be off steroids for a while to take the test.
I hope you get a proper diagnosis and get it under control soon, good luck
I’m so sorry to read your story. I can sympathise as I have been diagnosed with late onset asthma. I started in my late forties. Sitting out in the garden and couldn’t breathe. I Later found out it was due to my neighbours silver birch tree. I was continually at the gp with breathing symptoms and lived on steroids. Not only did the steroids make me feel awful and shaky but I couldn’t sleep. I was constantly at the gp who eventually referred me to the Royal Brompton hospital. Having been hospitalised 4 times and still on steroids they carried out numerous test and put me on a monthly injection called Xolair. My peak flow at best is 230/250. I still cough and wheeze every day particularly in the evenings but I haven’t taken steroids in over 2 years!! I’m an out patient with the RBH and am continually being reviewed and I am eternally grateful. The constant taking of steroids has given me cataracts and osteoporosis but overall I haven’t been hospitalised or taken pred since.
I’m not great at walking as I get breathless and I certainly can’t walk and talk but I’m learning to live within my capabilities. Make enquiries to see if you can get a lung function test.
I take two preventative inhalers every day abd a nasal spray and take my sabutemol with my everywhere.
Please dont despair. You will be shown a way to manage this with breathing exercises and steaming which is very helpful. I hope you find yourself in a good place soon.
You sound similar to myself when I was first diagnosed. Hang in there! Sometimes it takes a while (months) to calm exasperations once they start and if you've been catching a lot of viruses this will only hinder recovery. If you've been responding to asthma treatment then in all likelihood it is probably asthma. Definitely worth talking to asthma nurses and keep going back to the doctor as needed. Sometimes we need more than one course of steroids etc.
I'm 37 now and this last couple of months of virus/covid etc has also left me feeling sorry for myself on more than one occasion. I finally managed a short walk yesterday after 8 weeks of struggling so there is hope!
I have been similar, except my journey since diagnosis has taken a year and a half.
I am now on salamol, fostair 200 and spiriva.
Spiriva has helped a lot, it seems for me to prolong the effectiveness of the fostair. I also since taking have now not gone below 50 per cent of peak flow for two months.
I have allergic asthma that is poorly controlled. So I am working hard on the triggers, dust, cold air, damp, pollen. Control them and I will control my asthma.
Hi Lilly, sorry to hear you've suddenly ramped up to such difficult asthma! It is absolutely awful to be feeling like this and I and many others have been there. I'm still not fully controlled but definitely better than I was so there can be improvement even with severe asthma, once you find the right treatment combination. And
I do wonder, as someone else has said, if you already had asthma and it wasn't too noticeable before or you didn't recognise it. It suddenly coming on/getting worse, especially after a viral infection, doesn't mean it can't be asthma. I thought my mild childhood asthma had gone and then come back after swine flu but looking back, I did have symptoms at uni. The tight chest and shortness of breath you mention may have been anxiety yes but may also have been asthma (especially if you didn't actually feel anxious at the time!) Asthma can get brushed off that way though you can also get both - this post may be helpful: healthunlocked.com/asthmauk...
As others have said, if the Fostair MART isn't working then definitely ask to move to something else. Montelukast can be great for some but not helpful for others, though it can also take a while to work fully. These two posts may help with what's out there:
FENO, especially on steroids, is definitely not a firm yes/no for asthma - it just means that at the time you didn't have much of the inflammation it measures, but there's probably other asthma-related things going on to be causing your symptoms, even if the FENO was normal. There is more than one type of asthma, but it is worth trying to get a measurement of things when you're off oral steroids like your FENO, the eosinophils in your blood etc, as it might mean that certain treatments would help you and you'd be eligible for them (though there's a new one coming shortly that should be allowed for people without raised levels of either).
You may already know some of this but this post may be helpful so you know what to do when with your asthma (eg when to seek help etc): healthunlocked.com/asthmauk...
Finally, you may find it helpful to chat things through with the asthma nurses here as they have more time and often more expertise than some GPs and asthma nurses - though it seems like you had a good one who looked after you with the specialist interest, could you try to see her next time you need to? Asthma nurses are on: 0300 2225800 or WhatsApp 07378 606 728 Monday-Friday 0915-5pm
Everyone has given excellent recommendations, I would only add that this has severely knocked you about so try to improve your immune system. Also some asthmatics have been improved (not cured) with certain vitamins. Google for more information. Vitamin C is not really one of these vitamins but when I got swine flu, I found that intravenous injections of high doses of Vitamin C helped me to recover. Google Swine flu New Zealand Vitamin C for a News item on possible benefits.
LysistrataAdministratorCommunity Ambassador in reply to Tugun
I missed seeing this before, but please be careful about recommending this kind of thing. Vitamin C can be harmful in high doses (more than 2000mg/day), and there's no *good quality* evidence I'm aware of that it actually does anything for the immune system. I'd also be wary of getting my info from Googling news articles, as you don't know what information is out there.
The evidence is also a bit mixed on other vitamins re asthma, I think. Vitamin D is the usual one and there seems to be a lot of back and forth on that, though to be honest most people in the UK need to supplement with Vitamin D anyway.
Yes, I was the same; no asthma straight to poorly controlled and I was also lost & confused. It takes a while to find your way. Excellent support & info above but I just wanted to add that fostair may not be the best inhaler for you (we all react differently to meds). I struggled by with fostair but it wasn’t until I was changed onto relvar that I improved. As someone else said, keep pushing to try something else if you think a treatment isn’t working for you. Good luck x
Sorry i have no real answers for you but can sympathise as i too went from being diagnosed asthmatic at 59 after unresolved chest infections , bronchitis and pneumonia and it seems having almost everything thrown at it over the last 5 years still not under control salbutamol nebulisers make me so light headed i faint and salbutamol inhalers have no effect
Apologies for the delayed reply, I kinda went AWOL and decided to ignore the fact that I was asthmatic. I stopped checking my peak flow twice daily, I didn’t stop taking my inhaler but I didn’t want to go back on oral steroids again and as flow had dropped below 60%. I thought if I didn’t know my peak flow then I didn’t have to go back to GP/ED. I realise that this was a really silly idea but I wasn’t in a great place.
I realised that I was feeling really anxious with invasive thoughts, I wondered if this was the Monteleukast as I was warned about the neuropsychiatric side effects . I have now stopped taking it, and the anxiety has gone. My peak flow diaries appear to show that stress is a trigger for me.
I had a couple of days of leave and did very little except cuddle the cats and watch TV, thankfully this seems to have improved my peak flow and I am just over the 80% in the evenings. This seems to support my hypothesis, that exercise (including walking in the cold) seems to be a big trigger for me.
I am booked in to see the asthma nurse in 2 weeks so I will speak to her about stopping the monteleukast and your suggestions about trying different inhalers.
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