Struggling

[SJF89]

Hi everyone, just need to vent.... any advice appreciated.

I was diagnosed with asthma as a child, grew out of it as I got older, and spent most of my late teens and twenties asthma-free. My inhalers would literally gather dust (not good I know, but shows how controlled my symptoms were!)

Then 6 months ago, my symptoms started developing again and I would use my ventolin more frequently. Visited the asthma nurse in February and she put me on clenil (2 puffs twice daily). No joy with that, so we added montelukast to the mix, plus a spacer for my clenil/ventolin to make sure it was getting into my lungs OK. After about a month of clenil + montelukast, I got some control back, but was still using my ventolin daily.

Moved to symbicort in March (200/6, 1 puff twice a day). I actually had complete control of symptoms for the first few days, then it declined again. Upped symbicort dose to 2 puffs twice a day (on nurse's recommendation) and added daily antihistamines in case pollen was a factor. Again, worked for a couple of days, and then yesterday was awful - up half the night with laboured breathing, took about 8 puffs of ventolin to get it under control. Even now, after taking 2 puffs of symbicort + 2 puffs ventolin, my breathing doesn't feel right.

I feel so disheartened, especially since this time last year I was completely symptom-free. I don't understand why it's declining so rapidly, and seemingly getting worse the more I try to control it. Any advice/support would be welcome as this is really getting me down

Thank you, hope you are all having a good weekend

[Evie3]

I could relate to your post. Mine was out of control since last November....a two weekly cycle of antibiotics and occasionally steroids but still never got better...coughing, wheezy and phlegm. Was awaiting consult with Respiratory Consultant but decided to go private....best thing I had done. He has given me a long term plan but first to get my asthma under control. So he said got to hit it hard.....I am on 40mg steroids until chest is clear plus Relvar inhaler. First day of these today, so fingers crossed. Mayb you need steroids?? My doctor wasnt really happy with dose but.......... stay safe

[SJF89 in reply to Evie3]

Thanks for replying Evie, it's good to hear from someone in the same position. I have been considering steroids too - do you have to shield while you're on them? Never heard of Revlar either, is that a preventer??

thanks again, and stay safe.

[Evie3 in reply to SJF89]

I would think so. I am shielding anyway due to asthma and being immunosuppressed due to Rheumatoid Arthritis drugs. Happy Days eh! 😉

[SJF89 in reply to Evie3]

Sorry to hear you're having to deal with rheumatoid arthritis on top of this, Evie! I hope the steroids work for you soon

[Poobah]

I'm so sorry that you're asthma has returned with a vengeance. Sometimes it seems there doesn't seem to be any rhyme or reason to increasingly poorly controlled asthma.

Once you've discounted things like a change in diet of any kind and a range of other possibilities then it's that age old "just one of those things". I once swapped cows milk to soya milk and it made my asthma really bad. A friend started to drink wine and again asthma control declined. The sulphites in wines and beers can be a trigger for asthma in some. Or exposure to a new external trigger, which can happen if you change jobs, move house, new partner who smokes, a change in washing gel or conditioner etc. And one can't discount increased stress. Even increased weight will affect asthma control for some. And finally (that I can think of) changes in hormones.

If there's nothing you can put your finger on then trying to get the right mix of medications to help control your asthma is the best way forward. It's trial and error from here on in. You can try a different combination inhaler other than Symbicourt. Fostair or Seretide can suit some people better than Symbicourt. If you're taking a combination inhaler then you shouldn't need a separate steroid inhaler. Montelukast is good if it's known that allergies are the trigger. I forgot to take my Montelukast a couple of days ago and got really wheezy - it's a bad pollen season.

It helps if you know what type of asthma you have to decide on treatment. Blood tests and other tests can help with this.

Always have a follow up appointment when you try a new medication so efficacy can be checked, usually four to six weeks. As you say, you get relief for a short time but things decline again. We're all different and getting the right meds can take a while - just don't give up and keep going back to your asthma nurse until you're satisfied with your treatment.

All the best.

[SJF89 in reply to Poobah]

Hi Poobah, thank you for the detailed reply - I really appreciate it.

I had actually considered diet. For me, it happened in the opposite direction - I used to drink mainly almond milk and recently (in the past couple of months) transitioned to cow's milk. I can't think of any other significant changes. I can't believe it's the cow's milk, though, as I still ate dairy products (cheese, chocolate etc) while drinking almond milk in my coffee. I did have a couple of beers last night, but I drank heavily all through my twenties with no ill effects.

We did move to a new house in Feb and I originally attributed it to the old carpets in this place - but then it's weird that I have symptoms some days and not others. You'd think it would be constant if it were something in the house. Still, we are planning to get the living room refloored once lockdown is lifted. Maybe that will help.

I was on Seretide about a decade ago, but ended up with a chest infection and ultimately a major asthma attack that put me in hospital, so I don't think they'll put me back on that, but it's good to know there are still other options. Maybe symbicort + montelukast will be the way to go... I'm going to call the nurse next week and get her thoughts. It's just so frustrating, but you're right, the only way is to keep trying.

That's interesting about the blood test suggestion. I didn't even know there were types of asthma...

Thanks again for taking the time to reply.

[Wheezycat in reply to SJF89]

Just briefly, a quick reaction. Removed carpets..........fungus under floor boards? Such things could be worse on damp days.

[SJF89 in reply to Wheezycat]

Very good point Wheezycat... I'm sure getting rid of these manky carpets can only be a good thing. Fingers crossed.

Thanks for the reply.

[Wheezycat in reply to SJF89]

Yes, indeed! Be careful what you replace them with though. Some modern materials that have been treated in various ways can cause issues in some people. We put engineered oak in our living room about 2-3 years ago, and it was absolutely fine! But most modern materials add to indoor air pollution, unfortunately, so if it isn’t too weird perhaps try sniffing them? I didn’t sniff our floorboards as I wasn’t aware of the issue then. And I was delighted to get rid of the ancient carpets!

[Tugun in reply to SJF89]

Hi,

My sister drank milk all her life (milk shakes / in tea/ ice-cream and then in her mid fifties developed a violent reaction to it. She can no longer take even a little milk so for her- no ice-cream/ no milk-shakes unless they are soy and she uses zymil (lactose-free) in her tea but doesn't drink a lot of tea.

[Gerl in reply to Poobah]

i just got asthma 7 years ago and since then its down hill lactose intolerant so not used milk in years i am slow to take more drugs but have to and every time i take something stronger i need something with more kick started on symbicort 200 now on 400 spirive pulmicort tried to avoid the tablets they drove me nuts

[strongmouse in reply to Poobah]

Yes it can be really difficult if you develop allergies or reactions to other things like dust mite, pollutants, food etc. I have mutliple food allergies, inhalants (including pollens, cat and dog fur) and some chemical sensitivities.

if you think it might be caused by food or something you breathe in then keep a diary of what you eat or come into contact with and when you get symptoms. Food allergy reactions can be delayed, inhalant reactions tend to be almost immediately.

Asthma can become worse for no reason, but it is worth checking your environment and what you eat i.e potential triggers. Some people feel better when they are not at work so then it points to something in the work environment causing the problem. My son discovered his dust mite allergy this way. He worked in a basement office with old carpet on the floor and a ventolation system which hadn't been properly maintained.

if you suspect a food substance then you need to stop taking it at least three days and preferably a week to ensure it is out of your system. It is worth doing although you may find it hard if it is something you eat regularly.

Sadly what you were able to tolerate a few years ago doesn't mean you don't react to it now..... If you think it is something in the house and that is possible with a new house then keep the windows open as much as possible. Fumes will often air off over time - sometimes as much as six months - but heat (sun) may increase the fuming off process and cause a reaction. I can't tolerate new plastics, fibreboard (uses glues to put together) or gloss paint.

Hope you soon find a way of managing better.

[lakelover]

I would say you probably need steroids. When I was diagnosed I was put on a short course of steroids. The nurse said we need to hit it hard. She likened it to a fire. She said you can pour water on a fire & think you've put it out, but if it's still smouldering it will flare up again. You need to make sure it's well & truly out. Then your Symbicort will probably control things for you as it obviously helped at first so it should suit you.

[SJF89 in reply to lakelover]

Thanks for your reply, lakelover. That's an interesting analogy. I will be mentioning this to my nurse next week and will see what she says. Thanks again!

[Evie3]

I was never told what type of asthma I had??!!

[EmmaF91 Community Ambassador in reply to Evie3]

That’s nothing to be concerned about really. Most asthmatics do not know. It used to be only severe asthmatics were phenotyped but nowadays they seem to be starting to do it for everyone as it can help inform what meds will work best (ie a lot non-eosinophilic and non-allergic asthmatics don’t benefit from steroids, most eosinophilics have a good response to steroids, allergic will most likely benefit from a daily antihistamine etc etc). However the phenotypes are still often misunderstood at grass root levels anyway, and most specialist consultant will state there is still a lot they don’t understand about asthma and what drives it.

If you find a benefit from your drugs then you’re quids in if you’re not you go back to GP and try something new/different/extra. That’s the process whatever the phenotype you’re have.

Hope this helps

[Evie3 in reply to EmmaF91]

Very interesting....obviously done your research. I found out 8 years ago I was ‘a carrier’ for Alpha 1 deficiency as my children r positive. Mentioned this to Consultant recently and he said no evidence on CT scan of this, which is heartening.

[EmmaF91 Community Ambassador in reply to Evie3]

I’m an eosinophilic and atopic(allergic) severe asthmatic, who possibly has non-eosinophilic attacks too (I’m on a drug that takes my eosins count to 0, I still have non-allergic attacks). I only found out my drivers when they diagnosed me as a severe asthmatic and wanted to give me injections to help control my issues 😅. Phenotype is something interesting to know but until you’re at an uncontrolled level, it isn’t much used

[Evie3 in reply to EmmaF91]

Feel very ignorant.....will have to look that up! 😳

[EmmaF91 Community Ambassador in reply to Evie3]

Don’t feel ignorant - this is a learning space!

Phenotype is just what people thinks cause your asthma (right now the categories are atopic/allergic, eosinophilic and non-eosinophilic (which covers everyone not in the first 2 groups. Non-eos have sub categories which can get very specific 😅))

Severe asthma is a level/type of asthma where control is very hard to get for various reasons and you still bounce in/out of hospital when maxed out on the ‘normal’ meds you can get from GP/local consultant (9% of UK has asthma. 4-5% of that 9% has severe asthma, so it’s relatively rare).

[Evie3 in reply to EmmaF91]

I will research tho. Suppose I have been lucky later in my life as hadnt suffered. Now needing to know the ins and outs. Thank you😌

[lauraloris]

If you have moved house recently could the previous owner have had a cat? Cats make my own asthma worse, and also you don’t mention your age but menopause can bring on asthma or make it worse due to hormonal changes.

Not to mention stress and anxiety of course.

[sandravale]

Just a suggestion but have you changed your detergents, softener, soap or conditioner lately. It took me ages to find out that I was severely allergic to my softener and now I can't use any. Also any cleaning products can be problematic. I never used to have any problems but loo cleaner, bath cleaner, polish and glass cleaner are all triggers.

[Rebgiu]

Sorry to hear that you’ve been unwell! I had a similar situation this winter, very frustrating! I am now taking symbicort and montelukast, but I am also taking two puffs of spiriva (a bronchodilator) in the morning. In addition, I did have to take a course of oral steroids temporarily to reduce the inflammation. Good luck, I hope it gets sorted soon!

[Stespc22]

My situation was very similar to yours although I acquired asthma about 10 years ago as an adult. I had clenil no good then symbicort and initially I didn’t feel any better. I persevered with symbicort 2 puffs twice a day and after a few months i had control of my Asthma and the the only time I need my reliever is if i do exercise and I take a puff of my reliever blue and it lasts the full duration.

If I get a bad cold / infection my asthma tends to be a lot worse and some times I require steroids for a week to clear my lungs.

I also suffer from hay fever and I’m told by the Doctor is all related, I take a antihistamine Claritin for that.

Invest in a peak flow meter £8 from a chemist. I blow 740 which I’m told is good, everyone is different though. I only use that every couple of months or if my chest ever feels tight with a infection etc and that gives a good indication about your lung capacity.

Good luck hope this helps.

[Yellow75 in reply to Stespc22]

That is good peak flow. I'm on 450 at best but I'm in my 40s, 5 4 high and not a heavy build.

[Yellow75]

Also can relate, had asthma from 9 was exercise and cold induced at first. Then late teens found cold virus exacerbated. Then from 36 went completely out of control and felt affected all the time. Calmed down last year after montelukast and antihistamines added to Inhalers. Had problem with a virus at start of march not covid and issues with hayfever. I think I'm following my mum a bit, who had similar problems at similar age. She is now 70 odd but on lower preventer dose than me and peak flow good. I think it can go in cycles. My brother who was really bad as a child now has no symptoms.

[Smegs1978]

I’ve had asthma for 30+ years and up until 18 months ago I only used to have the odd flare up, normally during hay fever season, however the last 18 months have been awful, I’ve had about 20 hospital admissions and about the same of courses of steroids.

I’m currently on symbicort 400/12, 2 puffs twice a day, spiriva - 2 puffs a day, Uniphillian tablets 200mg twice a day, avamys Nasel spray and fexofenadine 180mg.

They stated uniphillian about 4 weeks ago and have seen a vast improvement, so I’m hoping that my asthma may just about be under control.

So I totally can understand how you feel, I have never found out why mine suddenly started to become uncontrollable,.

I’m still waiting for a few tests to determine what type of asthma I have and the best medication to have going forward, but can’t imagine they are going to happen anytime soon so am just happy it’s under control for the time being.

It definitely sounds like you probably need a course of steroids, also ask for a referral to a asthma specialist.

Hope things start to improve soon for you.

[SJF89]

I just wanted to thank you all for these replies. I can't reply to all of you individually right now unfortunately, but you've given me a lot to think about - and for those of you not doing so well right now, I hope things start to improve for you soon too

[TerryDavies1992]

Hi I’m in the exact same position as you atm Your symptoms sound a lot like mine I’ve been short of breath now since the 24th of March and like u my asthma was somewhat under control I think atm it’s a lot to do with the change in the weather I really do one day it’s hot next it’s cold I hope u sort it out mate ur not on your own I don’t even wanna get out of bed lately my breathing is that laboured so chin up mate