What is acceptable with regards to symptoms?

[Hanna222]

I’ve had asthma for many years, and I’ve been through periods of remission, controlled asthma, severely uncontrolled asthma, and pretty much everything in between.

After giving birth, and getting over two periods of uncontrolled and severely uncontrolled asthma, I’ve had around a year of extremely well controlled asthma. I haven’t used my rescue once outside of being sick, and I haven’t even needed it for rigorous exercise. I’ve literally had zero symptoms, until I started getting sick in the fall (yay toddler life).

Now I’m back to where I was pre pregnancy. I cough a bit all the time. I get phlegmy and wheezy after any type of exercise, even when I use my rescue inhaler prior to it. I constantly feel like I have to cough, and every single cold ends up as a chest infection. This is what life was like before. I didn’t think much of it back then because I was so used to it. Now that I’m used to being completely controlled, it’s just annoying. However, none of my symptoms are severe, and they don’t stop me from doing anything in my daily life.

How much asthma do you accept in your daily lives before trying to change treatment? I’m due for a yearly review, but I’m a bit hesitant to change treatment because I’ve had bad experiences previously.

[Homely2 Administrator]

I am always conscious with asthma that it can worsen quickly, which makes me a bit risk averse.

With your yearly review you have got an opportunity. I would ring the asthma UK helpline on 0300 2225800 to help you understand your options, so you know what you want from your yearly review.

Also have a look at your daily environment for an obvious trigger for your returning symptoms.

[Thomas45 in reply to Homely2]

I assumed Hanna was in the USA because she used the word "fall" instead of "autumn."

[Hanna222 in reply to Thomas45]

I’m actually in Europe, but I’ve spent some time in the US as well, hence the language confusion! 🥴

[Poobah]

I agree with Homely 2, in that seeking advice from the Asthma UK nurses on the helpline before your asthma review will prove beneficial.

I understand your concerns about trying another type of prevention treatment, you don't want things to get any worse. But if you chat to one of the helpline nurses about your current treatment and what you've had trouble with in the past, they can talk you through your options, aswell as give advice.

As your little one grows there will be exposure to all the colds & viruses little ones pick up in nursery, schools & social gatherings. You're already keeping on top of exercise but it wouldn't hurt to take VitD3, as recommended by the NHS. It helps keep our immune system in top condition, especially when we're not able to enjoy sufficient sunshine during the winter.

[Lysistrata Administrator Community Ambassador]

I totally agree with Homely2 and Poobah about ringing the helpline before your review. For most people, the aim is what you had until recently - little to no symptoms and needing reliever at most 2-3 times per week.

Putting up with regular asthma symptoms, even if they don't seem too bad, should not be the norm. Even if they don't seem too bad in themselves, they're a sign that asthma control is not as good as it could be, and they don't necessarily reflect exactly what's going on in your airways inflammation wise, which may be more than is showing in symptoms.

If they were worse you'd probably already know you shouldn't be putting up with them, but the fact they don't seem too bad can definitely make it easier to brush them off (I've been there and I suspect many others have too).

I appreciate it's tricky if you've had difficulty before getting the right preventer, but what worked for you before may not be right now, or it might need a different combination. Either way, it's good timing that you're already booked in, as if you weren't I'd be suggesting you see your GP or asthma nurse and call the helpline anyway.

[Hanna222]

Thank you so much for your kind replies, Homely2 , Poobah and Lysistrata . I’m not based in the UK any longer, so I doubt I have access to the Asthma UK nurses. However, I’m really happy that you have such a useful service in the UK. I wish it was there years ago when I lived in the UK.

I know that the cold weather is setting my asthma off, and before my pregnancy, it would set off as clockwork in the fall.

I’m already taking vit D and multivitamins as well. I used to think that that’s what kept me healthy for a year, until the kid started nursery… 😅

I guess I’ll come forward to the doctor with my daily symptoms. Sometimes I’m under the impression that doctors think that “not everything needs to be treated”, as long as it’s not dangerous. I’m aware that untreated/uncontrolled asthma can result in permanent lung damage, but I don’t even know if this qualifies as uncontrolled. They are just very minor, but constant symptoms.

The last time my doctor (pulmonologist) changed my meds, it resulted in 6 months of severely uncontrolled asthma, several awakenings, every single night, and coughing up blood. In the end I started having really bad attacks where my airways nearly completely shut, every single night for a few days. That’s when my GP demanded my pulmonologist to see me the same day, and I begged on my knees to go back to my previous treatment. Up until then, the the pulmonologist just kept increasing the dose, and adding other meds. Turns out it was just the steroid that did nothing for me. Now I fear that the next steroid will be equally bad. But this time I’m under the care of my GP, as I was kicked out the door from my specialist, since I’ve been so well for a year now. I very much prefer the GP after the whole medicine swap with the pulmonologist.

I’ll take all your advice, and speak to my doctor about treatment options thank you so much!

[Ortho10]

Speaking a lifetime asthmatic, I would say that it is really important that you keep your asthma under control.

Long term uncontrolled asthma, much the same as long term smoking can lead to lung remodelling and Bronchiectasis which are irreversible.

If you don’t find that your inhaled steroid is keeping you well, there are other options out there, ie Biologicals and Oral steroids.

Sorry to sound doom and gloom, but I would have liked to have been given this advice when I was younger.

[Hanna222 in reply to Ortho10]

Thank you for your reply! I’m fully aware of this, as I’ve been given this advice since childhood. The pulmonologist suspected bronchiectasis during my really bad 6 month long exacerbation because I had so much phlegm. He wanted to do a CT, but I was pregnant at the time, so he decided to wait. Luckily it all went away once I changed back to my old treatment.

I’m sorry you’re suffering because of living with uncontrolled asthma. I’ll definitely speak to my GP about treatment options.

[Ts777]

I went through a phase of being poorly controlled, but not being bad enough to get anyanyone's attention. I'm really wouldn't like to go back there. I'm sorry it's happening to you again.

If I was in that situation again, I think I'd get a peak flow meter and keep a diary of readings and symptoms to take to the Dr with me.

I think taking some written evidence of my struggles might help the Dr. to understand what's going on. After all, they are very scientific, so this might help them understand better than me trying to describe it?

I hope it goes well and that they help to get it sorted out.

[Hanna222 in reply to Ts777]

Excellent idea! Thank you! I do check my peak flow daily, but I’ll start writing it down. Whenever I’ve mentioned peak flow to my GP before, they act like I have no idea what I’m talking about. However, I’ve recorded my peak flow for the pulmonologist previously. It’s also good to have a recent record of peak flow in case I end up changing treatment. Then I can easily see and show if it’s helping.