Post Covid Asthma won't settle - Asthma UK communi...

Asthma UK community forum
15,849 members20,569 posts

Post Covid Asthma won't settle

Glty
Glty

Hi, this is going to be a long one.

I came down with suspected Covid at the end of March. Previous to this my asthma was well controlled on fostair 4 x 100/6, ventolin as needed (once a month or less), dymista and cetirazine. I've been on this lot for about 7 years with the occasional issue after respiratory infections, solved by temporary doubling of fostair.

Peak flow pb is 670 but on this regimen I would have a steady daily measurement of 550 and be essentially symptom free.

I'm still struggling with breathlessness and asthma control 11 weeks since starting with symptoms. I've seen little improvement in the past 6 or so weeks despite adding on extra meds. I'm back at work part time (from home) and whilst I can cope with the lost income I don't want this to go on any longer than necessary.

I appreciate these are unprecedented times and treatment plans are very trial and error. I hope someone can read through where I'm up to with my GP and asthma nurse (see below) and either give me some alternative options, or some reassurance that we're on the right track?

So the background /treatment so far:

Week1

My plan advises doubling fostair for any illness which I did as soon as I showed symptoms but after one week my peak flow fell precipitously to 170.

Week2

GP gave me pred (30 mg x 5 days) and increased my fostair to 8 x 200/6 a day. This helped, my peak flow increased to 500 on day 1 of pred but was only 325 at the end of the course and I was struggling with breathlessness, which was helped by ventolin, and fatigue but otherwise no longer symptomatic for covid. Peak flow through the day very variable (350-450).

I was concerned how I would react when the pred wore off and spoke to a nurse at 111. After a serious telling off for not shielding (I have never been in the very vulnerable group) she told me my peak flow was really good for my age and height - she wasn't concerned about my symptoms and ignored my pb and my usual measurement, she then told me I didn't need another course of pred but could call an ambulance if I needed help. I was feeling rather frustrated when I got off the phone!

Week3

GP and asthma nurse advised to keep going with 8x fostair 200/6 and add 2 puffs (or up to 10 if needed) ventolin 4 times a day with a review every 2 weeks, or sooner if symptoms worsen. (PF 350-500)

Week 4

Ventolin did help and now at 4 weeks since coming down with covid I was feeling OK when sitting still and only struggling when on my feet for more than 10 mins. I tried to walk around the block, but this set off my asthma really badly, improved by ventolin but lungs were twitchier for the next 4 days and Peak flow dropped back down to 275. Daily range (275-450).

Week 6

GP added montelukast as I suffer with rhinitis; this had little impact on my asthma and breathlessness but has improved my rhinitis. I was advised that it will take time to recover and that I need to rest, pace myself and that she suspected I probably have lung damage and scaring. Peak flow now more stable during the day (375-450) but only 450 max. I'm less breathless when active but still unable to walk far without asthma symptoms. Reduced ventolin back to as needed.

Week 8

Very little change. Still getting asthma symptoms when trying to go for a short walk (10 min). Having to use 2-6 puffs of ventolin most days. Peak flow ranges between 350 and 475 during the day.

Week 10

Asthma nurse and GP agree the lack of progress is worrying, I've had plenty of time for my lungs to heal and they are concerned that whilst the meds are stopping any deterioration, they aren't sufficiently dealing with the inflammation.

So I was sent for a chest xray, referred to chest clinic and started on uniphyllin.

Week 11

Since starting the uniphyllin I have reduced my ventolin use a little but no overall change in peak flow, it is quite variable - usually 450 when I first wake up, but drops to 350 during the day or if I go for a walk.

No appointment yet for chest clinic or result from the chest xray. Had blood test 5 days after starting the uniphyllin but not had results yet.

My asthma nurse and surgery team have been absolutely fantastic, and I've finally found out which GPs at the surgery specialise in asthma which is brilliant.

Thank you for making it to the end, is there anything you think I should try whilst I'm waiting for the referral?

Gemma

31 Replies
oldestnewest

Firstly ugh to your last few months. That sounds absolutely rubbish. Secondly - arrghhhhh to the 111 person who said your pf was good for your age and height 🙄. All I can suggest for future such comments is to firmly repeat what YOUR best (and normal if they're similar) is - if it's beyond expected levels for age/height then the expected ones could actually be dangerous for you. Not that that's always easy when you're not well. Also nice to be told off for not shielding when you didn't need to be 🙄

Some of the breathlessness could be post viral, as opposed to asthma - if one has flu or pneumonia (without asthma) it can take many weeks to recover, and so worse with asthma as well.

If peak flow is still struggling it does sound like asthma as well though. Does pf increase 20 mins or so after ventolin?

I imagine of chest x-ray had shown anything you'd have heard ...well I would hope so.

I know you're on cetirizine but is it worth asking to try fexofenadine (prescription antihistamine) instead? Pollen this year has been really affecting people and maybe your body needs a change to your usual one. It may not be that that's the main issue but just trying to think of something that might help in the meantime!

Glty
Glty in reply to twinkly29

Thanks twinkly, yes, I've been wondering about post viral vs asthma - I think it's probably a bit of both. My peak flow does come up after ventolin (also a bit after fostair) but I need 4-6 puffs to get to my pre covid normal, it lasts about 3 or so hours so asthma is definitely a factor.

It's a good few years since I last systematically tried a variety of antihistamines - I don't really find any of them work but it's an easy thing to investigate so I will.

Hi there, so sorry to hear what you have been through. It sounds similar to my recent few months, albeit my asthma is not as serious as yours. My suspected covid symptoms started mid-March (a week of low fever, sore throat, no cough and fatigue) and since then my asthma, which is normally controlled, has been out of control! And no idea why despite lots of investigations and docs consultations.

I am 43 and have asthma all my life and since I can remember I have only ever needed my steriod clenil 100 once a day during winter months or if I was ill with ventolin as a top up if needed after exercise or if very cold. I have had steroids when I have had a chest infections and as soon as I start them, they have always cleared up my asthma.

However, since March, and using my ventolin 4-6 times a day, I went up to 4 x clenil a day, then to Fostair 100/6 and eventuaully 200/6 4 x a day, plus two courses of steroids, and a trip to A&E to get it checked out after a serious SOB episode one morning. My chest x-ray was clear, my bloods showed no infection and my covid test was negative (in April). Plus my PF is the highest it's been in years (460/470) and my oxygen levels range between 97-99%. In case it was the pollen the docs put me on Fexofenadine, Mometosone nasal spray and montelukast.

Now, 3 months on, some days it is much better, e.g. 2 weeks ago I did a long bike ride, hardly used my ventolin in the day and had some processo in the evening, however the following week (this week) I am using my inhalers throughout the day. There is no consistency and I am at wits end too.

Luckily I saw a private resp consultant last week, who is running more blood tests, including the antibody one. My chest xray and ECG were again clear. I explained my journey and that it is more like a breathlessness/ SOB, rather than a wheeze, although I do have a slight wheeze first thing. He isnt sure what it is but he did explain it might not be asthma...but a post viral infection. He actually reduced me to Fostair 100/6 x 2 morning and evening, topping up with ventolin or Fostair throughout the day. It does feel a little better these last few days but I still need ventolin 1 x morning and PM and am also taking the Fostair at midday. Will see what today brings.

Sorry I can't offer any suggestions but perhaps some consolation that this odd breathing phenonema isnt just you!

twinkly29
twinkly29 in reply to Lizale611

That's interesting to know as I wondered about Glty's issues being post viral. Not necessarily a post viral infection but just long slow recovery from a nasty virus, the after effects I suppose after the virus has gone.

Glad you've had good support and been thoroughly checked out - and I hope it improves soon for you!

Glty
Glty in reply to twinkly29

I'm sorry you've also been having a battle, but it's so reassuring that to hear it's not just me.

I think it's the variability that I'm really struggling with, I keep thinking I'm improving and then it drops off again. It makes it really hard to work out what is going on and tell whether the treatments are helping.

I hope you start to see some improvement soon.

Lizale611
Lizale611 in reply to Glty

Thanks. I am totally with you that it is the variability and inconsistency in how you/ we are feeling/ how your breathing is! You think you are improving and then not. Just this last week I have been doing breathing exercises when I feel I am a bit tight (deep breath in, hold for 5 seconds and then breathe out x 5) and I do find that helps and sometimes I can then push using my blue out for a while, but I wouldnt recommend that if you really need your ventolin. But perhaps start with breathing exercises regularly and see if that helps. And fingers crossed for your results.

My covid antibody test was negative today, but the consultant said again that it doesn't mean I didnt have it, as it might be that I fought it but didnt build antibodies. My white blood cell count was low so that indicates I have been fighting an infection (at some point) but all other tests were clear! So he still thinks that mine is not asthma driven so to continue as I am on the Fostair and take blue as needed....and that it will hopefully get better in time, as I recover.

Bertyboy
Bertyboy in reply to Lizale611

Interesting to read your journey. You mentioned the consultant said it might not be asthma. Yet you have had asthma all your life?? I'm in a dilemma. Never had asthma. Post viral cough and tree pollen started it. Covid and antibody test negative. Chest x ray and CT thorax all clear. All bloods clear. Asymptomatic at mo. Doc and nurse trying me just with ventolin now if needed. Preventor stopped for now. It's really excluding things and time will tell Asthma or not. I'm watching and waiting. Unsettling!

Lizale611
Lizale611 in reply to Bertyboy

Yes, it's strange as I immediately thought it was asthma, hence speaking to the docs and they administering more and more inhaler treatments. The consultant said that there might clearly still be asthma involved and to continue on the Fostair 100/6 x 2 a day and see where we go. Now, with hindsight I can see that the tightness and SOB I was experiencing (and still am but it is reducing) is not the same as I have had before. I do think I had Covid or another virus and that has left me with breathing issues...so hopefully time will heal!

I can’t be of much help really, but I have noticed you keep reducing the amount of Ventolin you are taking. It might be an idea to back to more frequent/larger doses until you have recovered properly.

You do seem to have a good medical team around you. I get the feeling that recovery is likely to be quite a lengthy process.

Glty
Glty in reply to Troilus

Thanks, that's a good idea. I think I also need to be patient and take the time to recover, it isn't easy though!

Hi Glty, did you test positive for covid? (Sorry if I’ve missed this). Hope your symptoms improve soon. I think this is one of the concerns when you already have a respiratory condition - the after affects, which are largely unknown at the moment with this particular virus.

Glty
Glty in reply to EvieJo

I came down with it before testing was widely available so I've not actually had a test. The symptoms fit exactly so I'm pretty sure I did have it. My partner came down with it about a week later, he had a 4 hour fever and coughed for a few days. Its so strange how differently it affects people.

I’ve read your post with interest. I too have had an almost identical experience To you. This week is the end of week 12 for me. My symptoms of a sore and hoarse throat, loss of taste and one night burning up started on 20/3. I had no coughing .Since that date my asthma which has been controlled since a child has been uncontrollable. I’ve only ever had one short course of steroids 5yrs ago. I normally take seretide twice a day and have no requirement to take my ventolin In the day even when exercising. Since March I have been on 8 Prednisolone a day , manteluklast, Flixonase, fexofenadine 180mg and 3 piriton, seretide and still using my ventolin up to 40-50 times a day with no relief . I’ve had a 10 day course of ciprofloxacin back in April in case there was a chest infection present. I’ve had an Ambo out due to the deterioration in my breathing and ventolin use, they advised there was a subtle reduced airway in right upper lobe and possible Chest infection still present hence second course of antibiotics a 10 day course of clarithromycin . I’ve had a chest X-ray (clear) , two lots of bloods all clear and a covid test in April again clear. My doctor advises that covid would have passed to my chest by this time anyway so an antibody test is needed. The Drs advise that asthma meds will not work on covid breathing symptoms which is what I have found. I have bought air purifiers and oxygen boost cans which do give a little help. I have also now started on Dymista nasal spray and another new inhaler called Alvesco 5 days ago which I think has helped a little. I have read a few articles that this inhaler is actually being used and found to help respiratory covid patients in Wuhan which is interesting especially when I think it is helping. I had been moved onto trimbow COPD inhaler another strong inhaler and this did nothing for me. My peak flow goes between 280-320 and my blood oxygen between 92-98. I have been tested for pulmonary embulis as lots of covid patients are found to have clots. This case back negative and I am now waiting for a high intensity CT scan to check for covid lung damage. Having spoken to my drs they believe this is all post viral covid and it is just taking a long time to recover , the smallest of tasks like sweeping the floor make me sound like I have had a run, a walk with the dog exhausts me, other days just sitting on the sofa my asthma flares up. My symptoms change daily. I still have a loss of taste, fatigue has crept in but this could be linked to me already having diagnosed ME . I hope I haven’t rambled in too much but this has gone on so long now and it’s nice to find people in similar situations and to learn from others. I am also a key worker but have been signed off work for 11 weeks now, prior to that I was working from home shielding . I am happy to chat to anyone in this situation!

Glty
Glty in reply to Jobie1

Crikey, that sounds terrible, I hope you start to improve soon. X

I have been dealing with Covid staff at work for 12 weeks and all I can say is everyone is affected by the virus differently . Some of my colleagues are still off work 12 weeks post virus because they are still suffering with the extreme fatigue and breathlessness ....and these are staff who are without pre existing conditions - others bounce back within days - it is such an unknown virus no one knows how we are going to recover .. every day is a new day in Covid land is my current motto !!!!

My advice is take each day as it comes viruses affect individuals differently - especially if you already have twitchy lungs - it’s rubbish I know ... keep speaking to your GP, do some good diaphragmatic breathing exercises to help your lungs relearn what they need to be doing but only if you are able ....

Sorry we don’t have answers ... it’s rubbish and this virus is nasty - many underestimate the impact it has( not saying that’s you ). Take care x

I came down with suspected CV March 17

I’ve been up and down since then. Was told 3 month recovery by a few HCP’s, 3-6 by others. Ended up at a hot hub clinic the other week and they said they see a lot if up/down, don’t know why. I’m doing breathing exercises as bottom of lungs weren’t inflating. Otherwise rest, rest

Only thing is being 300% sure no infection

Btw not everyone’s peak flow goes down. Mine never does- I tell them that I’m advance, helps.

One random thing is you May want to check out / histamine / mast cell activation. My fatigue was very linked to that but flared badly with this Covid (along with a ton of other random symptoms I have/had)

Jobie1
Jobie1 in reply to Kikkles

That’s a new one to look at. I haven’t heard of the mast cell activation . That’s why I like groups like this. I will do some research 😊

Kikkles
Kikkles in reply to Jobie1

Mast cell activation is rarely dx but increasingly tied to IBS, bladder issues, hives, chronic fatigue, anxiety-you tend to have a whole range of symptoms. Often people are hypermobile, triggered by food, and sensitive hours lots of things

Jobie1
Jobie1 in reply to Kikkles

Yes I do have a great deal of symptoms. My problem being that they are all linked to covid and all my meds. I can’t wait to get this CT scan done to see if I have lung damage. The drs are pretty convinced this is covid and the long recovery but it’s nice to look at possible alternatives

R1100S1
R1100S1 in reply to Jobie1

Take care what you read re mast cell activation as it’s so full of dangerous theory- the cells use the same frequency of the old tv broadcasting and are of lower power than many natural sources.

My opinion though but research both sides of story

Stay safe

Just wanted to say I'm sorry, what a terrible sounding recovery! I don't have much insight. I had COVID in April but my asthma quieted down after a few weeks. Hopefully your lungs just need time and space to settle. Glad your doctors have been so great. Take it easy and let us know how you're doing.

Jobie1
Jobie1 in reply to hilary39

I’m glad you recovered from your covid. I just want confirmation this is post covid now. I’ve resigned myself to the fact it’s a long haul slow recovery. It’s just very frustrating . The fact my asthma meds are not working also suggests more covid, the drs have tried acid reflux meds too and antihistamine in case pollen levels have anything to do with it but ruled it all out. Seems to be the only likely outcome for all my symptoms now . It’s scary how many people had the same symptoms at the end of March and are still experiencing the same problems. All too much of a coincidence I fear. Let’s hope the scan date comes through soon and I get answers 🤞🏻

hilary39
hilary39 in reply to Jobie1

Yes hoping you get a scan soon and that the news is good and it's just lingering inflammation!! I know sometimes when I have bad attacks it takes me weeks or even months to recover. I had a flare up last weekend and I'm still struggling to take full breaths. Our poor lungs are so delicate!

Let us know what you hear about the scan. Sending healing vibes!

Jobie1
Jobie1 in reply to hilary39

Thank you . I will 😊

I have had asthma all my life. I am 54 non-smoker not overweight and still pretty fit. My wife is a teacher and one of her colleagues had suspected covid virus. Anyhow my wife then developed the symptoms and in April I had a runny nose no temperature or cough. But I was struggling to breathe. I am only using a Symbicort 100 inhaler, my asthma has been very controlled. So my GP prescribed Amoxicillin and Prendislone which I cannot stand as it makes me depressed. I have never experienced asthma like this, it as if I had rice or flour in my lungs. I had to go back to my Doctor and meet him in the car park of the surgery. He examined my chest took my temperature, blood pressure and o2 level which was 91. I was then prescribed Doxycycline and prednisolone. Anyhow I improved slightly and thought I was on the mend. May 24th went to A+E o2 88-90. Chest x-ray clear. Sent home with more Amoxicillin and prendislone with the clear instruction to come straight back if I had too. The hospital was very busy as it was a bank holiday. So I kept on taking the tablets. Back to my GP last week now given a Ventolin rescue inhaler which has helped. My GP then dropped the bombshell you are post Covid asthma and in the recovery stage. I couldn't believe him, I nearly dropped the phone. So eight weeks later I am still struggling breathing my o2 is 97-98 but I still feel rough. My anxiety is really bad at the moment so bad that my doctor has prescribed Fluoxetine which is an experience in itself, I have to give it a month and I am only a week in. I asked my doctor why I didn't have a temperature I developed a cough later but that could be down to asthma. The question that I have is did anybody have that feeling of breathing through rice of flour? It was a horrible experience. It was like no other asthma attack that I have had. One other thing which I have never experienced was when I blew my nose last week I had a bloody discharge loads of it. As the doctor told me it is an evolving virus and it affects people in different ways.

Jobie1
Jobie1 in reply to Gibboelect

I’m sorry to hear you have had a hard time too. There are so many of us suffering with similar curcumstances!. My throat has been my only main symptom the whole way through, starting with the hoarse throat then feeling like I have cotton wool or something lodged in my throat. I have constant phlegm there but nothing to cough up. I must admit though every day I have different symptoms. A few nights I have had raised temps over the last two months and one night was freezing cold . My loss of taste has remained constant throughout. I am a key worker and have a force dr and he called covid straight away when my gp thought it was pollen. Straight away he told me my asthma meds would not touch it and I was in for a long recovery with the way my symptoms were not reacting to medicines. I was using such high ventolin 40-60 times a day at my worst along with all my preventative inhalers and meds and oxygen..very scary 😔. My gp has only 8 weeks on now turned to be totally covid hence now requesting the high intensity CT scan for lung damage. I have nail damage and all sorts from the 11 weeks 40mg on Prednisolone it’s strong stuff. I’m down to 30mg this week slowly trying to wean down week by week. I now have the added problem of swallowing down the wrong way which also I am told is a sign of lung damage. It’s all very alien to me having had previously very controlled asthma and only one flare up that very quickly came under control with steroids. I think the Alvesco inhaler as previously stated is having some effect, this was recommended by asthma Uk and is apparently being used in covid patients in Wuhan. I’m interested to see if any other covid asthma patients find it helps. Let’s hope yours gets better too.

I have had the same trouble and was continuously on pref from February until May. I take Fostair and have now added in Montelukast and Spiriva Respimat as suggestion of asthma nurse from resp team at the hospital.

Hi Glty,

I hope you are feeling better now.

I have similar issues.

I had all covid symptoms lasting for more than a month. But even when my low grade fever, chills, sweat, loss of smell passed chest tightness and difficulty breathing persist. It's been more than 3 month now. I got sick on April 4th. However I haven't had asthma for last 15 years. I have had it when I was 14, after pneumonia. I have used steroid inhaler after for couple of years and my asthma disappeared. So I haven't been using any inhaler last 15 years. I have been healthy with no underlying condition before I got sick.

Now doctors say I got asthma again due to viral infection. My CT scan and X ray are good. And my covid test was negative.

I have been prescribed also prednisone but I don't think it helped much. I have been on it for a month. I have been on advair 230/23 inhaler (2 puffs 2 times a day), flovent 110 (1 puff 2 times a day, now decreased to 1 puff am), montelukast, omeprazole, duoneb nebulizer treatments 3-4 times a day and ventolin as needed.

A week ago I got hives so antihistamine was prescribed, which I haven't used since it makes me drowsy and anxious and than my breathing is worse.

I have had bad days and better days. On a good days my chest tightness/pressure is not so bad and my breathing is better. However, that last couple of hours during a day and than I have bad days again with difficulty breathing chest pressure. I am also dizzy, week, disoriented... It has been rollercoaster, it goes up and down. I just start thinking that I am recovering, when everything comes back again. Lately I am able to go for a walk. But during/ after walking sometimes I feel worse. Also I noticed that after a meal I feel worse.

I have been eating healthy and trying to go for a walks. But I feel nothing is helping much.

I have been reading about post viral fatigue sindrom and covid long haulers.

I would recomend to take a look at that. It explains what is happening but no one has an answer when it will go away.

I really hope you are doing better now and I wish you fast recovery and all the best.

It's a month later and I feel like it's maybe a good idea to give a little update.

Despite the addition of uniphyllin continuous, my asthma hadn't really improved much. I was referred to the resp team 6 weeks ago, but unfortunately they had a 18 week wait before covid, so after 12 weeks shutdown, many extra referrals and now significantly scaled back clinics it's going to be a while. My GP did suggest (semi-seriously and in desperation) that if I could let myself get into a state and then present at A&E it might jump me up the queue but I'm not keen. I've been lucky to have never been hospitalised with my asthma.

Due to the potential wait she eventually agreed to give me another course of pred even though my peak flow is no longer desperate. I did have to push quite hard for this. I explained that I felt like 3 months of trying add ons and inhaled steroids have held deterioration at bay but not given me back quality of life and that we'd given it a fair try. I'm now on day 4 of 7 and am feeling so much better, I sincerely hope it lasts.

I am still struggling with other post covid problems; extreme fatigue disproportionate to exertion, muscle weakness, cramps, high heartrate etc but the shortness of breath is now just that and isn't also setting off my asthma if I try and walk to the end of the road.

These are improving, but I am having to very carefully balance activity and rest. To anyone else in this situation, rest is critically important - I need to stop and rest long before I start to feel tired or risk feeling dreadful for the next few days.

In case it is useful for others. I have found the positive path of wellness (covid UK long haulers) group on Facebook really helpful. They have a lot of success stories as well as links to helpful resources to aid recovery at a gentle pace that doesn't risk relapses.

This sounds so similar...end of feb/beginning of March had high temp (41C) which for me is unusual anyway- and diagonised with really bad tonsillitis. Took till end of March to recover and get back cycling. April although was cycling didn’t feel 100%. Then last 2 months- breathless to just speak at beginning of May1 inhaler clenil modulite 100mg doubles to 8 puffs a day. Week later changed to Soprobec 200mg. At which point I could talk and breath but even half a flight of stairs and I was breathless. From 90mins on a bike easy to 3 mins and spending 3 hours recovering enough to do anything else. Then about 2 weeks ago changed again to relvar Ellipta 92/22. Whilst been some improved if I go for a hours walk takes about 5 days to recover. Peak flow a bit erratic but actually pretty normal.

Hi Glty

It is not unusual to take a long time after an infection and not just viral, bacterial infections can take a long time to recover.

Thankfully and touch wood I have been infection free since the end of March 2019.

At the start of December 2018 I got a bacterial infection called Moraxella Catarrhallis which makes them resistant to some common antibiotics, such as penicillin and ampicillin. I have never felt so ill. At Week 4 my chest was clear but I did not feel human or clear of the infection until mid February - 10 weeks in total and I was clear for 6 weeks and then got another 3 week infection.

Honestly it was months before my energy rebuilt around July 2019 but I definitely think my asthma has deteriorated.

You are Asthmatic and have COVID a new viral infection you need to try and do things but pace yourself and don't overdo it. Seriously although the infection is over they are still learning about the post viral effects of this disease so please be kind to yourself and don't berate yourself if you do less than you think you can. Do not compare yourself to others and what they are capable to do.

Have a read -

bbc.co.uk/news/uk-england-s...

People talk about post Covid experiences

inews.co.uk/news/coronaviru...

No one knows what is normal following this virus yet.

You may also like...