This is something of a ramble, but I feel like I'm at the end of my tether.
At the end of May I had several severe asthma attacks and I still don't feel right over half a year later. In the immediate aftermath of the attacks, I was given prednisone to help get the inflammation down and since then my inhaler has changed multiple times to try and get things under control. I've gone from clenil (what I was on when the attacks happened and have been on since I was diagnosed with asthma) to sirdupla, fostair, back to sirdupla due to side-effects from the fostair and I'm currently on revlar, which I started around three weeks ago. I've also been on montelukast for, I think, 4 months.
After the attacks, I was really uncomfortable even just sitting around the house or moving from room to room. The combination of montelukast and sirdupla helped improve things so I was comfortable moving around the house (they also improved my peak flow readings), but my mobility remained very limited. Subsequent inhaler changes haven't improved matters; on a good day, I can walk around for 7 minutes without needing my reliever inhaler (ventolin) afterwards, although there's some discomfort afterwards (a tightness or pressure in my chest).
I haven't been seen in-person at my GP surgery at all since the attacks; everything has been over the phone. I've spoken with different doctors and for the past few months have been dealing directly with their breathing nurse. I normally speak with her monthly, to discuss how the inhaler changes have been going, and I should be speaking with her later this month. I understand things are beyond difficult this year with covid-19, but I feel like I'm a kind of limbo with no end in sight with only minimal medical support.
Lately I've been wondering if there could have been long-term damage from the attacks or if it could even have been covid-19. I've not been out and about since mid-March (which in of itself is enormously draining), but it's possible someone else in my household could have been asymptomatic and passed it on to me without realising. Or maybe the chest infection I had for a while last winter impacted me in some way. If it was just asthma, I feel like I'd surely have seen more of a change in the past six+ months with my inhaler hopping? I'd like to get scans or tests done, but all the hospitals here are at (or over) capacity, so I can't imagine that'd happen anytime soon.
I've been trying to cope with this as best I can, but it's getting tough. I used to walk regularly and went to the gym, so being so physically limited and effectively housebound by my asthma (as well as the pandemic stresses) has really taken a toll. The longer it goes on, the more I wonder if it'll ever get any better and that's challenging to deal with too.
Has anyone had similar experiences with their asthma and if so, how did it progress? Or could there be something in the idle wondering about covid-19/other causes for my ongoing issues? I feel really in the dark about things, so I'd be very grateful for any feedback.
Oh, and thanks for reading all of this!
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garfunkel
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Hi, my experience is that asthma is an individual journey. I reached 49 with zero symptoms and then had cracked ribs followed by chest infections. I felt I was better and then collapsed outside followed by a blue light to A&E 25 miles away. After a few weeks in hospital I was diagnosed with asthma. A year past with a clenil inhaler when things deteriorated. Thankfully my GP referred me to the local specialist. My breathing worsened resulting in medication changes with montelukast, spiriva, fostair max dose & antihistamine. None of these changed anything and I had seven attacks in seven months requiring prednisolone. I thought I would never have a normal life again. Thankfully my Consultant pushed for me to be given Mepolizumab. Since then, I have had one attack {ambulance to A&E} in 18 months. My life feels like I don't have asthma. One of the problems with asthma is that everyone is different. It takes work with your Consultant to reach a stable life.
Hi! Thanks for sharing your experiences. You've really had a horrendous time with asthma - I'm glad you've been doing a lot better in the past 18 months. I think you're exactly right about it being an individual journey. My asthma was well-controlled for over a decade (able to go to the gym, etc) on clenil until this year, so hopefully I'll be able to reach a stable place again.
Hi, sorry you've been struggling and you're right that it's a difficult time at the moment - but also how hard it is being in limbo or just not seeing a light at the end of the tunnel. Very frustrating. I'm glad you've got regular nurse reviews though and I'm sure she'd speak to you in between times if you need to.
I think it's unlikely that damage was caused by your attacks but people can go from being nicely controlled for a long time to not being - and then (as you've found!) it can be quite a journey finding the key to different treatment because it's a very personal thing.
Inhaler hopping (good term!) can be very unhelpful too, although of course often it's a a necessary thing. Many inhalers take 6-8 weeks to fully embed so usually the good effects won't fully be felt until then and, before that, people can either experience side effects as you have (sometimes these are not tolerable at all and sometimes they diminish and disappear over the embedding time) or they can feel things are "worse", "not working", etc....but in reality it's just that during the embedding time understandably they aren't yet getting the full medication so there's that wave to ride.
I don't know if that makes sense 😅. Basically a long journey can be normal unfortunately. It's possible you had covid unknowingly but also it could be any number of things that upset the balance. Age, time of life, hormones, etc, can do just that, for example , and sometimes our bodies just decide they don't like a certain medication anymore. Helpful!
I know you said your peak flow improved on the sirdupla so you must track it regularly, but are you able to (if you don't already) do it when you feel symptomatic, and then redo it 15 mins after ventolin? It could be that, after so many ups and downs for you, it's more than just asthma at play as our systems get worn down and breathing patterns can get skewed - like our bodies find an easy way to breathe rather than the best way. This is really common after an attack or a time like you've had struggling to get on top of things. This post might explain some of that.
It may or may not be relevant but worth a read. Not being out and about much can also have a negative effect as we become deconditioned - again not always possible to avoid I know.
If after your relvar has said time to show itself properly you don't feel it's sorted, it's ok to ask for a referral - it's better to be in the system waiting than not I think. Even if in that time things did actually improve for you and you were back to being controlled, the worst would be that the consultant realised things had improved and said great all good now.
Really feel for you, I have a very similar story, and I am also your age. I wish I could offer you a solution but after some years, many hospital visits, in two different countries, both of which haven't been able to offer any solution my situation has remained unchanged. Lack of mobility is very hard to live with and is depressing, at times, I do what I can when I can having a rant is therapy as is a good laugh.
I sincerely hope you find that light at the end of your tunnel and your mobility becomes more manageable. Sorry if this sounds gloomy not ment to Good luck🍀
Hi Rosalada. That's really rough! The lack of mobility is definitely a big challenge to live with, but hopefully things will improve for both of us as soon as possible. Best of luck with it!
Hi twinkly. Thanks for such a detailed reply, I really appreciate you taking the time. It's definitely quite a shock to go from being well-controlled for over a decade (since I was diagnosed, really) to the current state of affairs, but also reassuring that it's (unfortunately) normal.
The covid query was in my mind because the breathing nurse asked if I'd had a cough or (I think) temperature around the time of the attacks, so I wondered if it was on her mind too. I feel like I'd surely have known if it was covid, but I suppose it's hard to say either way. I've been on the relvar for a little over 4 weeks now. I haven't seen any improvement yet, but perhaps there's still time.
Tracking the peak flow when symptomatic is a great idea. I've been trying to give the breathing nurse as much data as possible (how long I can walk for on a good day without needing the blue inhaler, what my symptoms feel like etc), as dealing with it over the phone is a bit limiting.
It sounds like the nurse is good (as much as one can be over the phone) so whatever you're telling her is helping I'm sure.
This site is good for breathing exercises. It was respiratory physio recommended for asthma but much of it would probably help for other stuff (such as any post covid issues if any of those are underlying - which is possible as many people seem to struggle with breathlessness and stamina and so on. It's almost easier if they weren't or aren't asthmatic as it's easier to say ok it's probably post covid issues.... but with asthma as well it's trying to unpick what is asthma and what is not). So in case it's of any use, it's free to sign up and remembers where you've got to in the steps:
Also Asthma UK have a post covid hub (0300 2225942) and I'm sure they are very used to people saying "help, I don't know if I had covid or not but this is what's going".
Recovering from asthma attacks can be difficult and take a long time unfortunately and I really empathise with your current predicament. All the inhaler hopping is frustrating but getting the right cocktail of treatment should help. It sounds like you're not on a LAMA inhaler (e.g. Spiriva, Eklira Genuair). That would be the next step in the treatment plan escalation. Are you wholly on dry powder inhalers or aerosol or a mix? While you're respiratory system is hypersensitive the dry powder may suit you better, just in case the propellant is an irritant. I only suggest this because of your description of the after effects of taking the Ventolin.
When I have a flare up I do try (not always succeed) to do some breathing exercises. My respiratory physio always at pains to tell me that proper use of the lungs is half the battle, or words to that effect. She observed that my breathing changes to shallow when I struggle with a flare up. And lots of exercises to improve my inhaler technique, which is not great during a flare up - I struggle to inhale deeply, hence the need to do my breathing exercises.
It's a positive that you're being monitored on a monthly basis, but clearly progress is too slow. I would be honest with the AN the next time you speak to them and be prepared to say what you want and that you're willing to try another add on inhaler or medication (if you are).
The current disruption to normal GP services is certainly not helping many of us, but it just means we have to be better at communicating our needs, to leave our health professionals in no doubt of our needs etc.
It maybe worth talking through your current situation with one of the Asthma UK nurses, just to get a clear idea what next step treatments you can expect, so that it's easier to ask for them.
No, I'm not currently on a LAMA inhaler. I'm currently taking Revlar once a day and Ventolin whenever I need it - I believe Ventolin is an aerosol? Sorry, my wording wasn't great: I don't have issues taking Ventolin, it's how my lungs/chest feel after around 7 minutes of walking, even on a good day. I'd hoped trying to walk regularly, even in small bursts, would help build things up, but I suppose it's not going to help massively until the medication side of things is right.
I'll definitely have to research good breathing exercises for asthma, as it sounds like they could be pretty helpful. I'm absolutely willing to try another add-on inhaler or medication; anything that'll help! The Montelukast definitely helped a bit and in turn, switching from Clenil helped (I was doing very badly on just the Clenil), so perhaps another add-on is what's needed to get further progress.
Athma uk nurses really halped me when i had a similar problem back in the summer. lots of telephone advise from the gp surgery nurses and pharmacist got me nowhere with their blind treating. At their advice i attended A&E twice then had to insist the gp saw me a few weeks later in person where he realised i needed a little stay in hospital to get on top of things. For me my asthma always needs treating with pred and often(when not caused by a virus) long courses with a good weaning time. On that ocassion it was out of control so long i also had an infection going on that didnt respond to amoxillin or another antibiotic the pharmacist prescribed. Now telephone call can hear whats going on in youŕ lungs. Please seek a face to face consultation
I think many of us have had unexplained exacerbations that we think might be as a result of Covid, my asthma has been very up and down since March when I think I had it to the extent I've had to take daily 5mg Prednisolone, something I've never had to do before. Things are getting better but it's been very slow progress and like you I was quite fit and active before March, now the most I can manage is a 10 minute walk round the park. I've also found getting support from the GP difficult, they have also stopped doing asthma reviews which cannot be right, thankfully I'm under a consultant now and they seem much more willing to push things forward.
I think maybe you're at the point where a referral to a respiratory consultant may be a good idea for further investigation and as Poobah said I'd definitely give the asthma UK nurses a ring as they are aware of the protocols the GP should be following regarding your asthma. It's a confusing time for many of us and the support we should be getting is harder to get, you just have to take each day as it comes and not look too far ahead and take care of your general health as much as possible.
I'm sorry to hear you've been having a rough time of it too, but I'm glad you're getting support from a consultant. Hopefully that'll be an option for me too. I definitely think your GP is in the wrong - it can't be right to leave asthma patients in the lurch like that.
Ringing asthma UK sounds like a good idea. It's always helpful to get as much information as possible. All the best for your ongoing recovery!
Hello Garfunkel, l share your pain. I am in the same, if not worse predicament. Mine started in March. I was only diagnosed with asthma beginning of last year ( Feb). I suffered with it until August of 2019, l felt better. I was put on seretide, salbutamol and another inhaler..don't even remember the name. I was given Montelukast as well. But in March this year when the Covid started, l started feeling hot and cold and then started getting chest tightness and pain and then shortness of breath followed. It was madness. They changed my inhalers a number of times...the last inhalers l was given were symbicort 400 and ipratropium bromide in June. I did 3 Covid tests, all came back negative and numerous blood tests as l was admitted to the hospital 4 times. I did all the Xrays, ecgs...all fine but still was breathless. In June my GP gave me a course of prednisone 40mg a day for a week, l started feeling better but as soon as l finished the course, my breathlessness came back so l was given 2 more courses. I started to feel better from August until end of October when l started feeling hot and cold with severe headaches again. Few days after, l started coughing. I have never coughed like this in my life so l phoned the ambulance and went in to the A&E. My temperature was 40 so immediately they admitted me. They did the swab for Covid and it came back positive. I spent 2 weeks in the hospital and even in the ICU. I am home now but it hasn't stopped although l feel a bit better than l was before the hospital admission, l am bloody weak now at the little things I do...even brushing my teeth and it makes me breathless after. It's crazy. I also suffered with GERB...but a bit better now. Asthma is never ending. I saw a respiratory doctor at my surgery and have been put on prednisolone again as l am bloody breathless at the little things l do..a lower dose so hopefully the breathlessness will stop. I feel a bit better yesterday and today so hopefully asthma will leave me alone 😡. Asthma is hell. Keep fighting and go to the hospital if you think it's getting worse as it might be the Covid which is lingering in your body like it lingered in mine since March but never was seen until October. All the best.
Wow, that's utterly horrendous! I really hope things improve for you as soon as possible and that you receive whatever support you need. Best of luck with your recovery!
Also l would say you have to be persistent with these doctors.. I was never seen face to face. I gave up myself, at a point. All the consultations on the phone. I only saw a respiratory doctor 5 days ago face to face. So it's tough but keep trying. Don't give up.
Hi, If you do have a chest infection - whether it be bacterial or viral - then there are medicines to help. You definitely need to contact your doctor straight away.
Hi Tugun. Thankfully, I don't currently have a chest infection, but I did have one last year that lasted for quite a while and I'm uncertain if there were any long-term ramifications from that.
Hi Garfunkel, I’m so sorry for your discomfort. I’m right there with you, into my 4th month of trying to tame this beast call d asthma. Mostly I’ve been on steroids, nebulizer, Wixella 500 2 x a day (pretty helpful) rescue inhalers etc. monteulast at night. Seems mornings are when I can do anything physical. I have the non wheezing kind, however towards evening my breathing becomes shorter and I get on my oxygen. Have your Docs and nurses try different treatments. It’s hard to get off steroids but that’s my plan now. I’m taking 20 mg every other day, and actually feel better on the days I don’t take them! We hate this debilitating disease and don’t like feeling unproductive. Stay in touch, and let us know what works out best for you.
Hi Maltesemama. I'm sorry to hear you've been having a rubbish time of it too. I should be speaking to the breathing nurse before Christmas, so hopefully we'll be able to talk through potential options going forward. Best of luck with your ongoing recovery!
Hi Garfunkel! Seems we’ve got some of the same issues! Hope you get that visit very soon! Am into my 4th month of constant asthma challenges. I find it is manageable with ventolin, nebulizer with Albuterol and prednisone (tho I keep trying to get off the pred). Have had to avoid any exercise except sitting down ones. Best of luck to you in kicking this thing that debilitates so many of us! Keep us posted. Afraid I’m looking at my new normal. I used to kick it a week or two. Oh well, hang it all!
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