Do you ever go back to “normal”? - Asthma UK communi...

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Do you ever go back to “normal”?

Mannyd25 profile image

I am 49, work a physical job and single (widowed) mother to 2 teenagers. 🙄🙄

I was only diagnosed with asthma this year following 6 months of worsening SOB ended in a 3 day emergency hospital admission. I was discharged with my 5 day course of steroids, and Symbicort SMART inhaler. I also take Fexofenadrine daily.

I felt great - I really did! Back to being able to jog upstairs.

By early October my breathing was starting to decline again. Nothing drastic but slightly puffed up stairs or fast walking. Phoned GP who gave another course of steroids. Also added Montelukast as I was 24/7 blowing my nose.

The Montelukast has worked 🙂 but that dose of steroids never seemed to put me completely right, and by start of December the GP prescribed another 5 day dose and changed my inhaler to Spiriva (2puffs a day) and Salbutamol as a reliever.

I’m now 3 weeks later and I know my breathing is still not right. The steroids didn’t make much difference. Yesterday I was at work and had a fairly good day (was lifting furniture, and only rested once). Today I’m at home and SOB again, and needing to use my reliever.

I’ve always been affected by smells (perfume, flowers etc), but am now more and more affected by heat. The root of my asthma hasn’t really been investigated due to Covid, and although I had X-rays in hospital (all clear) my GP practice won’t physically see anyone at all (yes, seriously!)

So - my question is. Do I just accept that I will never be back to normal? That I will always have a slight shortness of breath - made worse by my known triggers (and possibly unknown ones)? Do I just need to slow down (I’m more of a rush around person). I phoned the GP today to book an asthma review - the first appointment was for 5th January

14 Replies

I'm sure some others will soon join in and give you helpful advice - it can take a while to get on top of asthma so don't despair. The majority of asthmatics can get their symptoms under control, take their meds and live an active normal life.

In the meantime, if you're struggling and can't speak to your GP, 111 will make sure you get a consultation if you need it (possibly by phone) and if it's really bad or your reliever isn't working ring 999.

I'd also suggest you try and ring the nurses at asthma UK tomorrow, they're really helpful in these situations.

I'm surprised about your inhalers as you don't seem to be on a steroid inhaler as a preventer, but asthma UK will be able to offer suggestions for you and your GP to try - there's still lots of options for you, it just might take a little while to find what works for you.

Good luck!

I agree with Glty, it can take a while and a lot of trial and error (proper trials of new inhalers etc, not a few days and switch again as some seem to do), but most asthmatics do find that control.

The Asthma UK nurses would definitely be a good call (literally!)

I'm also surprised you're only on spiriva. No steroid preventer inhaler now. That would definitely be worth discussing with Asthma UK.

Hello Mannyd, I also had bad months with asthma attacks, irritable cough and shortness of breath.

I was on 2 times 2 puffs Budesonid per day as preventer and Salbutamol as reliever. But it didn't change anything and made me more sick, I felt dizzy, had high heart rate and my coughing became worse after using the reliever.

Then my doctor changed the treatment and tried a complete different way.

I started to inhale plain hypertonic water with a nebulizer every 2 hours starting at 7 am and the last time at 9 pm. After 5 days I changed to every 3 hours, then every 4 hours.

When I felt much better I started using RC Cornett (respiratory muscle training) with the nebulizer and reduced the sessions to 3 times per day 7 am, 1 pm and 7 pm. Followed by a training with Powerbreath to train my inspiratory muscles.

During that time I only had Viani ( Fluticasone/salmeterol) as preventer and I started with 3 days one cortisone tablet in the morning.

My lungs volume slowly increased and is back to 75 till 80 %.

But 3 times per day inhaling with the nebulizer and breathing training with the tools is my new normal.

I have to do it every day, and every month, forever to prevent that my lungs again weak and breath becomes short.

And twice per day 1 puff viani.

My doctor gave me Ipravent instead of Salbutamol as reliever, to avoid the side effects.

I'M NOT trying to persuade anyone to replace meds with exercise.

This was my way and a big relief for me after almost 3 months of not being able to do anything without having an asthma attack several times per day. Even the slowest moves weren't impossible.

But think about and talk with your doctor about tools for respiratory and inspiratory training.

The breathing muscles and diaphragm are muscles and muscles are increasing with training.

Hasel17 profile image
Hasel17 in reply to Hasel17

I forgot, I also changed my diet.

To avoid so much mucus in my lungs I cut off all dairy products from my nutrition.

Only very rare a little bit Pecorino cheese or yogurt for the salad.

Itswonderful profile image
Itswonderful in reply to Hasel17

Thanks for sharing this. Please can you say more about your breathing exercises?

Sorry you're not back to normal. I'm a bit surprised by your GP putting you on Spiriva and just a reliever. Normal escalation of meds includes a combination inhaler (e.g. Symbicort, Fostair etc) which includes steroids, which taken regularly should maintain things. Spiriva is not what I call a long distance inhaler and is only as good as your last inhalation. Also keep an eye on your blood pressure on Spiriva, just as a precaution.Definitely go back to your GP and request a suitable replacement for the Symbicort - Fostair may suit you. You can still keep your reliever for the odd occasion that you need a little extra help. However, using it more than 3 or 4 times a week may be an indication that things are sliding.

If your GP practice has a dedicated asthma nurse it may be beneficial to discuss your case with them.

All the best.

Mannyd25 profile image
Mannyd25 in reply to Poobah

Thank you for replying. My mum is also an asthmatic (adult onset) and she says the same thing last night (re steroid inhaler).I was wheezing last evening, then coughing half the night, then really breathless and wheezy this morning.

I’ve phoned the GP for an emergency appointment today. And I still have my old Symbicort inhaler here. But I’ll ask about the Fostair. I get the feeling that there is no one really specialising in Asthma at the surgery - and my asthma clinic has been closed since April (I’ve only seen an asthma nurse once - in hospital - and she put me in the Symbicort)

I’ve taken the Spiriva and one Salbutamol this morning - am still coughing and still breathless up the stairs 🙁

Poobah profile image
Poobah in reply to Mannyd25

Good luck with your appointment. Hope you get something to make sure youOK over Christmas.

Mannyd25 profile image
Mannyd25 in reply to Poobah

You couldn’t make it up.....When the doctor said to me last time “I’ve given you a new inhaler, 2 puffs in morning plus Salbutamol as a reliever” she was supposed to finish the sentence with “to be taken AS WELL AS the Symbicort”. No wonder I havnt felt right 😳

So, I’m now on 3 inhalers.... with another dose of steroids if I feel I need them over Xmas. Feel much better already now I’ve just had 2 puffs in the symbicort.

Thank goodness I phoned. I try so hard not to worry my kids (aged 13 and 16) who had to watch their dad die of pneumonia/MS 8 years ago (just before Xmas), and sometimes pretend I’m ok when I know I’m not.

Poobah profile image
Poobah in reply to Mannyd25

Communication is often the weakest plank of asthma treatment. First thing I learned in my job was "never assume". "Never assume the patient knows what you're thinking" should be carved on every doctor's desk! I'm glad you got things sorted and hopefully with the Symbicort it won't take long to feel alot better.

I lost my dad at Christmas when I was 12 and I know that I was acutely aware of how my mum felt then, and every subsequent Christmas. I suspect that your kids are just as concerned for you as you are for them. Have a wonderful Christmas and enjoy good memories together. And we're always here if you need an ear. 🤗

Hi , from personal experience I have learnt to manage my asthma , and the good news is that I have had no attacks for quite a long time now . The possibility of a recurring attack is always there , but yes , it is possible to get back to normal . Hope this gives you hope !

Mannyd25... Hopefully taking the combination of it all will help it settle down longer term... It does take time but hopefully you'll learn to be able to manage it.I'm on similar combination to you symbicort, spirva, ventolin, antihistamines, montelukas etc... Maybe ask for a nasal spray as well if perfumes, hayfever etc are a trigger.

Asthma UK give really good advice on clarifying maximum dosages etc if you want more info.

Personally on my Drs advice I increased my symbicort to help regulate my breathing.... Spreading it out throughout the day has helped during this year and decreased my use of ventolin.

Good luck.

Hi I've been on spiriva and fostair for the past 3 years. I'm still breathless I have recently been diagnosed with a hiatus hernia which I think is causing some of the problem.

Hi,

As others have said it can take a while with trial and error to find the right combination of medication but you’ll get there.

I despaired with my asthma at the start of this year as despite the strong steroid medication I was in and out of A&E every month and had been for some years. However working from home since March and being less exposed to triggers has done me the world of good! I’ve now been ‘A&E free’ since February. I’ve still had attacks but I’ve got myself out of them.

Reducing the stress in my life, getting my hormones under control with reflexology and working on my mental well-being have massively helped so there is light at the end of the tunnel.

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