Oral Steroids: Hi, I'm still... - Asthma Community ...

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Oral Steroids

Lee2k182 profile image
9 Replies

Hi, I'm still undiagnosed but being treated for asthma until anything changes. I got a bacterial chest infection in April (11 weeks ago), multiple abx cleared that back up but I still feel breathless (especially going in) and produce a small amount of clear phlegm. I also have lower throat irritation.

I was wondering at what point you would take oral steroids? Like what symptoms would asthmatics have before they start on them?

I've also changed from Symbicort ppwder to Fostair powder 3 weeks ago with no improvement. I was given 40mg of steroids today and Fostair aerosol.

Thanks

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EmmaF91 profile image
EmmaF91Community Ambassador

With asthma typically GPs May start prednisolone when in yellow zone, and will almost definitely start it if you go to red zone on your asthma action plan.

(From the AUK asthma plan;)

YELLOW ZONE; My asthma is getting worse if I’m experiencing any of these:

My symptoms are coming back (wheeze, tightness in my chest, feeling breathless, cough). I am waking up at night. My symptoms are interfering with my usual day-to-day activities (eg at work, exercising). I am using my reliever inhaler three times a week or more. My peak flow drops to below 70-80% of my best.

RED ZONE; I’m having an asthma attack if I’m experiencing any of these:

My reliever inhaler is not helping or I need it more than every four hours.

I find it difficult to walk or talk. I find it difficult to breathe. I’m wheezing a lot or I have a very tight chest or I’m coughing a lot. My peak flow is below 50-60% of my best.

It is not unusual for infections to trigger off asthma, and so steroids are given to calm that down!

Hope this helps

Lee2k182 profile image
Lee2k182 in reply toEmmaF91

Thank you Emma. Because I don't officially have a diagnosis yet, I don't really have an action plan. My plan is to have inhalers thrown at me to see if anything improves lol

I generally feel well but I keep getting intermittent breathlessness throughout the day, especially air going in as I feel some resistance. I feel if I breath through my mouth it's slightly better (I don't feel like my sinus are stuffy). I've had this since my infection 11 weeks ago, it's so uncomfortable. One min I'm fine, next I'm not, it can be as frequent as every 10 mins.

Told the drs this and she just said an infection can cause asthma to spiral. But 11 weeks!!? Seems a long time. My peak flow stays the same at around 540/550. Think my best ever was about 560ish. In fact my peak flow never really changes ever, maybe dips to 500 but after about 10 goes, I get it back up to 540ish.

My consultant calls me a head scratch cos I'm not typical of asthma but I've had CT scans and x-rays all normal. Even my reversibility was questionable at 9% and 400ml. She said it's not quite the threshold for asthma but the 400ml was huge which suggests asthma.

Anyway I'm rambling 😅

hilary39 profile image
hilary39

Even if you’re waiting for a diagnosis it could be good to follow an asthma action plan to be on the safe side. However I’d think it’s best to be under a GP’s guidance when taking steroids. Is there no way to get in this week? What is the criteria they’re waiting on to officially diagnose you? My doctor has me start steroids if I’m not responding to my rescue inhaler within 30 min but to be clear that’s just my experience, we don’t give medical advice here. Good luck! Let us know what you find out

Lee2k182 profile image
Lee2k182 in reply tohilary39

Hi Hilary, thank you for your reply. I was given some steroids by my GP, before I posted this, but I was just wondering, at what stage of symptoms asthmatics would be at to take steroids. I was just gonna soldier on until my next resp appointment as I'm not gasping for breath, just uncomfortable. I don't believe I asked for any medical advice in my comment, but just for symptoms asthmatics go through before they think "right, time to ring the GP to see if I need them". As a complete novice I assumed you would need to be gasping for breath for days.

I'm unsure what the hold up is, I think it's because I don't present with typical asthma symptoms. I just get wheezy and lately I've been short of breath. I'm not responding greatly to inhaled steroids, and my reversibility test was on the fence. As asthma is meant to be at least 12% with 200ml, but I was 9% with 400ml. I'm assumed asthmatic because of the large 400ml bit (which I don't know what that is). My next plan of action is a methacholine challenge but my consultant says that could be months away.

I have noticed, these last few weeks that my ventolin doesn't really do much anymore, it used to be a big help a few month ago, so dunno why all of a sudden it's not doing much now, any ideas? Again I've mention this to gp but we are just giving the oral steroids a go 1st, I'm on day 2 and don't feel any different.

hilary39 profile image
hilary39 in reply toLee2k182

The good news it sounds like you’re on top of it which is great—you so totally have to be your own advocate when it comes to having a chronic illness.

And with my point about medical advice, it’s more about the guidelines of the group which emphatically specify we should not give each other medical advice and to make that clear in our posts. (You can imagine how dangerous it would be for strangers to give each other advice on how to treat a potentially life-threatening disease! :) )

Your symptoms do sound puzzling and I’m glad you’re getting all the tests done that you can. I had the methacholine challenge once and it was a little uncomfortable but helpful for diagnosis (they basically trigger and then treat an asthma attack and measure how responsive your airways are).

I do notice it sometimes takes a few days for steroids to kick in for me so that could be what’s going on or perhaps it could be another condition mimicking asthma—vocal cord dysfunction, other lung or heart issues etc.

Keep doing exactly what you’re doing and stay in touch with your GP, get signed up for tests, and in the meantime take a look at this asthma plan (if you haven’t already) to get a sense of how we monitor and treat our condition when symptoms change:

asthma.org.uk/b42999dc/glob...

Lee2k182 profile image
Lee2k182 in reply tohilary39

Oh I've learned about being your own advocate. I took me 9 month to get a referral to respiratory after being told countless times there was nothing wrong, until I refused to leave the GP practise until I got one. After that I left that gp and my new one is so much more willing to listen to me.

With regards to tests, I've had a lot. PFT with reversibility, full bloods, RASTs, 4 x-rays, a HRCT scan- all normal. Trialled Clenil, Symbicort powder, Fostair powder, Fostair aerosol, antihistamines, nasal sprays- all with no effect.

I did have a bacterial chest infection with haemophilia influenzae 4 month into my symbicort that's cleared up (never had a bacterial chest infection before) and was told infection can happen when on steroid inhalers by my resp consultant.

So yea, I'm a head scratch according to my resp consultant. Up text methacholine. I dunno what's left after that, but my 1st spirometry definitely showed obstruction so it's not in my head.

Ill just have to see how I get on with this steroid.

hilary39 profile image
hilary39 in reply toLee2k182

You didn't have breathing issues before, right? This is a new thing? Do you have allergies? Did you move into a new home or workplace? Some people develop asthma out of the blue but I've also found some develop it in response to a new allergen.

I once worked on a floor in an office building that had water damage and was filled with mold and I was so sick for 9 months until I moved to a different floor.

I often have doctors who are completely puzzled by my symptoms. I have severe asthma but my spirometry results are pretty good and I rarely wheeze. My current pulmonologist is baffled by my asthma and says I'm her most severe patient in spite of the fact that my lung function is totally decent.

A trend I've noticed on this board is that despite that fact that 350 million people around the world have asthma, we still know very little about how to treat it in moderate and severe persistent asthmatics. We also have very little means to get medicine into the small airways which for many of us is where it manifests most (and why we so often need steroids--we have to shock the entire body just to get at the small airways).

Lee2k182 profile image
Lee2k182 in reply tohilary39

I know it's crazy to think how individual this condition can be. I have read articles on asthmatics that do not respond to steroids- if I am asthmatic, I guess this would be my category. I'm just worried that my ventolin is starting to not work as much.

Yes I could breath fine before my viral chest infection Xmas 2018 that wouldn't shift for 3 month. I had RAST test which is bloods taken to check for allergies, they were all in normal range so I can't be allergic to anything? Also, my home is a new build home and was 6 month old when I moved I so no mold or anything. I work in a hospital but not around chemicals or ling irritants and my consultant has ruled all that out.

I've not had a second spirometry yet, only had my 1st in September last year so I'm due one and I'm interested to see the results. Physically I think I will be worse as I'm more symptomatic since being on inhalers. Prior to my inhalers I just had a wheeze with no breathlessness. Bit of ventolin sorted that but I did have to use it 4-5 times a day. I want to try coming off the inhalers just to see if I improve but I fear if I do I'm just holding up the "next steps" of my treatment.

It's crazy you being classed as sever but still having good lung function, it just shows how individual this really is. I don't know how lung function is measured, I'm assuming it's the fev1, mine is 93% I believe. But when they sent those results to my GP (I got a copy of the letter with the numbers too) I dunno if the numbers were my baseline spirometry or my post bronchodilator numbers. It didn't say. I'm hoping it's pre-bronchoilator as my fev1/fvc% was rubbish at 68% (my fvc was like 112%).

hilary39 profile image
hilary39 in reply toLee2k182

You poor thing, sounds like you've been through a lot of ups and downs and testing. Hopefully you'll get an answer but it just might take awhile. I once spent a week at the Mayo clinic in the states (it's a place where you can go check in and basically get every test under the sun and see a ton of doctors in a row--that's where I had the methocholine challenge :) ) I was desperate for answers but after exhaustive testing they basically said their only suggestion was for me to start Xolair. So I did and my asthma has improved but I still have really debilitating flares like the one I'm in now and have been for a month :/

I'm curious what your situation is because it does sound unique and outside of the box. My asthma is so clearly allergen-driven so at least I know my causes (though it's nearly impossible to avoid cats and dogs and pet hair on people's clothes etc.)

Feeling out of breath is always disturbing and unnerving regardless of the cause so I hope you get answers soon! It's weird that the inhalers seem to potentially be exacerbating it. And I can imagine it's nervewracking to feel like the ventolin isn't working as well as it has (though I get that from time to time, too). How many times a day / week are you using it?

Have you had any heart tests? Every once in awhile certain heart conditions can cause breathlessness but that wouldn't really make sense in terms of a virus having triggered all of this...

It's cathartic to talk about all of this! My friends and family are great and check in a lot but it's so different than talking to everyone on this board who truly understand what it's like to feel miserable and to not be able to breathe day in and day out and to have to wait for ages to see different doctors and to get different tests and to try different meds etc. etc.

Keep us posted on whether the steroids kick in!

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