Steroid tapering : I have been given... - Asthma UK communi...

Asthma UK community forum

18,618 members22,799 posts

Steroid tapering

Leigh2305 profile image

I have been given more steroids from the dr. I am not sure when to start tapering the dose. I had 12 days at 40mg. I’m on day 4 of 30mg. My next asthma review is the 14th December.

I’m feeling a bit better but still waking a couple of times with a night coughing fit. When I go outside it’s sets my chest off also. So I’m wondering when to continue reducing them down. My peak flow is between 70-80% most days now.

The drs say to reduce when I start to feel better.

I’m using my reliever between 20-30 times a day. Which is a reduction. I also started new inhalers on the 17th and think they might be starting to work

Obviously I don’t want to take the steroids for longer than necessary and I don’t want to reduce too soon

I also know this is far too much to be using my reliever. However I don’t have a wheeze and I’m on the highest asthma medication there currently is. So a and e have told me only to attend if my peak flow continues to drop after using my reliever and drs can’t doing anything else as I’m on the highest current inhalers I need to see the consultant. But so far my next appointment is February. So currently feeling like I’m stuck in limbo of not really knowing what to do.

28 Replies

Great you are feeling slightly better BUT having to use reliever 20-30 times a day is extremely high. Personally I wouldn’t be even considering reducing steroids. In fact if you continue to need such high levels of reliever I would speak to gp before mid December asthma review.Hopefully because you feel new inhaler is helping as time goes by that will continue.

Leigh2305 profile image
Leigh2305 in reply to Bevvy

Gp just tells me I should seek urgent medical attention and shouldn’t be using it that much. If I seek urgent medical attention they tell me I don’t meet their criteria. I’m not wheezing, my PF isn’t dropping below 50% and I can talk in sentences.

So I’m trying to figure out at what point is feeling better? The steroids make me feel lousy as I have a thick head with them. The 30mg dose feels better that the 40mg. Plus as I gain weight that then increases my asthma symptoms and I’m gaining weight fast. It’s my 6th or 7th script now for pred since September

Bevvy profile image
Bevvy in reply to Leigh2305

Well gp needs to push for quicker consultant appointment than February. That number of prescription for steroids isn’t good. Due to Covid you may not get a quicker appointment but gp needs to be more proactive.Plenty of people here attend A&E who do not wheeze. Hopefully someone will come along to be able to advise you on what to say/how to present in those circumstances.

Leigh2305 profile image
Leigh2305 in reply to Bevvy

It’s the follow up from my new inhalers for the consultant. So at least I’m further forward than I was. As earlier in the year was the same but being told no one can do anything as new inhalers only prescribed by aras clinic.

I will see how I feel early next week but a and e tell me to reduce my steroids while attending with a bad flare up as I’m not bad enough to be there. It’s really frustrating as when I get a neb I feel much better for ages but they won’t give me a neb as no wheeze and obs are fine. Leave me for hours then tell me to go home and taper my steroids.

I’m hoping for a big improvement soon as I’m off work still and feel I should be a lot better by now.

runcyclexcski profile image
runcyclexcski in reply to Bevvy

>>>but gp needs to be more proactive

They won't be. I solved my GP non-proactiveness problems by going to a private consultant. Got an appointment within 2 weeks who then initiated Xolair referral. W/o that, I would still be going to AE every week and not sleeping.

Hi Leigh, I’ve read through everyone’s comments and agree with what they have said. I am seen by a hospital consultant every 6-12 months depending what is going on, but in between times I have appointments at the chest clinic in the hospital. I can contact them at any time during appointments. I wondered if your hospital has the same kind of thing?Failing that, you could try ringing your consultant’s secretary and ask for an earlier appointment explaining why. A telephone appointment would be better than nothing

Leigh2305 profile image
Leigh2305 in reply to Troilus

I spoke with a respiratory nurse on Tuesday from the respiratory clinic who was speaking to the consultant as he said I shouldn’t be using my reliever that much. Then no updates as of yet. Just to continue with my steroids until I feel better and taper them down.

That was following an a and e visit on Sunday and one on the Friday. I got a neb on the Friday but only because I was holding my chest while talking to the dr as it felt really tight. He was in the process of telling me to taper my steroids. He came back in to tell me to taper my steroids from that day. I guess if I was following the a and e drs and just tapered them I probably would be needing emergency care the steroids seem to be keeping me above really bad at the moment

My visit on Sunday I was told by the a and e dr if I need to use my reliever twenty times then just do that. Only go back if my peak flows still dropping down when using my reliever.

from what you are describing, it is too early to taper. 30x a day despite 40 mg/day steroid is poorly controlled asthma, you need to get a referral to a severe asthma clinique. Either by calling the GP every day (which I tried and failed) or going to a private consultant who then can find ways to prioritize you for review for proper treatment. Mine had a double appt with the NHS, so he was able to get me in through the NHS for Xolair, and then I made sure I kept seeing him, not a random person each time who has to spend the first 10 min of a 15 min appt catching up what is going on.

I will ring again on Monday.

I’m not planning to taper yet but just wondering when ‘feeling better is’.

Because usually I’m fine by day 3-4. My last one was day 6. But this time it’s day 16 and my peak flow is increasing but I still have a cough set off by the wind and the cold weather and sleeping at the moment.

I know a cough from a chest infection can linger. I feel like I have two coughs. The one that’s productive and stops when I bring something up.

And an asthmatic dry cough that goes on and on unless I use my blue inhaler 3-4 times to stop it.

Which is an improvement as It was 10+ to stop it at the weekend.

I get a couple of hours then the dry asthma cough again which feels like my chest is irritated and sore before I cough. I don’t have the tight feeling across my chest now though

Steroids used to help me, too ("fine by day 3-4"), until they stopped helping last winter. If there are persistent triggers in the air, and a self-sustaining inflammation, the symptoms will come back once the steroids are gone. This is the idea behind using inhaled steroids (to avoid systemic use, but also to keep the inflammation at bay). The inhaled ones are meant to be used "forever" which is better than systemic ones.

There is a standard questionnaire on this forum that specialists use (ask around!) which differentiates "poorly controlled" from "controlled" asthma, with questions like N uses of releiver inhaler per day, waking up at night, being limited in daily activities etc. By any measure, using the "blue" inhaler 30 times a day (or feeling the urge to) would surpass the "poorly controlled" score by far. Once properly controlled, things like dry air, pollution etc should not make you take the reliever daily -- inhaled steroids should take care of that. In my case, looks like Xolair would bring it under control.

I would also look into triggers at home -- your sleeping situation, air quality, air humidity, allergens etc -- to avoid unnecessary triggers. I am on Xolair for 6 weeeks now, and I haven't used my reliever inhaler in a week, while before I was using it 20x a day (while on 10mg/day steroids). But I also take extreme measures in controlling the air particulates, VOCs, temperature, and the RH 24-7, and I wear a full respirator everywhere outside of my house.

Between flare ups I barely use my reliever. I think the weather is the trigger currently

I’m debating on getting some type of mask to help when outside that I can wear to prevent the cold air.

Bevvy profile image
Bevvy in reply to Leigh2305

A simple scarf or “buff” will help prevent cold air being breathed in. Or even the mask you have worn (if you did) re Covid. Certainly if just trying to cope better with cold air then it doesn’t need to be anything fancy.

Just looked at xolair. They took my bloods to see how much is allergy related. I know in the summer it is by hayfever. But I don’t feel so much allergy related in the winter.

do they know the IgE yet? My GP took my bloodwork 3 years before I had my last-year flareup and never mentioned/paid attention that my eosinophiles were high. They could look up your past bloodwork -- eosinophiles are a standard measurement, I believe.

In addition, the IgE and eos won't be elevated while you are on oral steroids; if they made the IgE measurement w/o asking if you were on steroids at the time, it would be unprofessional, or careless. My private consultant asked me to wane off steroids (I barely managed) and only then to come for the IgE/eos measurement.

The mask would be a simple experiment to try. The cold air may not be the whole story: dry air can be a problem too (when cold air enters the mask it warms up, but the relative humidity drops). When you are outside, you are presumably walking and exerting -- that would make it worse, too, since you are exposed to more of the cold/dry air per breath (more air is needed to walk). When they do exercise-induced asthma challenges in research they explicitly say "cold dry air".

I was already on steroids when they took my bloods. I told them I was on day 7 of 40mg at the point of going for my appointment where I started the new inhaler on the 17th. I swapped fostair for revlar. Which has done wonders stopping the cramps which would have been even more unbearable with the extra ventolin on top. Plus I don’t thing the fostair was working for the reliever aspect as by the end I was on the full mart and no difference. And they added spiriva which I’m assuming is doing something as my chest tightness was there all day with the cough. But now just the cough and no tightness.

It’s not a long walk as its for the school run. Even standing breathing has the same issue. I’m using a scarf to try and minimise breathing in the cold air

You could also try a P2 disposable mask and put the scarf on top. Summer is bad b.c. of the pollen whereas the winter is bad for poorly conrolled asthma b.c. of the cold dry air, wood burning (fireplace "coziness" at the expense of poisoning the environment), diesel and coal used for extra heating, and air inversion phenomena which are more frequent in the winter.

Standing still uses more air than sitting/lying down. It took me 3 months to be able to stand up again w/o feeling short of breath.

The joys of asthma. On the plus side the last two years have been great for my hayfever as the montelukast have worked absolute wonders. I hope they don’t stop taking effect as it was lovely having minimal hayfever for two summers

Hi do you take a daily antihistamine?

Are you a smoker ?

Leigh2305 profile image
Leigh2305 in reply to Darceydoo

The antihistamines don’t have any effect in the winter. I packed in smoking last year fully as after the occasional cigarettes my chest felt sore after.

Darceydoo profile image
Darceydoo in reply to Leigh2305

Is it asthma only or have you COPD?

Leigh2305 profile image
Leigh2305 in reply to Darceydoo

Just asthma pulmonary tests confirmed this

Hi...I feel you need to go to a severe asthma clinic. using your reliever 20-30 times daily is way too much. I don't know what the criteria is with the urgent medical attention you sought but time to get to people who know what they are doing.

I’m under the clinic. They haven’t given me any further advice other than if I attend a and E in office hours they may be able to see me.

On the plus side last night my cough didn’t wake me and ive only used my blue 2 times today.

I used it 39 yesterday though. So this is where the conundrum is.

My peak flow is 79-89% of my pb today. It was between 69-85% yesterday and and 69-79% the day before.

It usually takes a couple of weeks post steroids to get my peak flow back up where it fluctuates between 660 and 720 daily. Do I now reduce gradually like 25mg for a few days. Then 20mg.

I’m changing my drs on Monday as I’m sure they were connected to my previous gp and may have the same asthma nurse. She was really helpful.

However it’s still a while before I get an appointment and I may not have any additional answers from anyone as seems the case so far.

I said to the steroid prescribing gp that I needed to taper but not sure how. He said just taper when you feel better 🧐

My issue with the previous gp was my prescriptions would often be delayed. However I have moved and this gp is located close to where I live. And may risk delayed prescriptions with a monthly drama compared to just feeling like I’m being left to crack on at the moment. It’s still over two weeks for an asthma review for an action plan when I’ve gone from fostair mart to revlar and spiriva.

I feel I was given the steroids 4 pack of 28 with no discussion of what tapering means. I’ve never tapered before.

Lysistrata profile image
LysistrataCommunity Ambassador

Hi, I do sympathise as you seem quite stuck. You should not just be mainlining reliever at home waiting for your peak flow to drop. It actually sounds like you are in what I and other asthmatics call 'limbo' - needs attention, not quite acute enough for A&E necessarily most of the time, so everyone passes the buck and tells you to do something different. It's really hard, and I strongly feel the system of asthma care in the UK is not at all well set up for this situation.

Having said that, I don't know that you aren't acute, because the A&E you go to appears to have a poor understanding of asthma. They should not be using wheeze, peak flow and sats as absolutes this way, and they're also contradicting what you've been told about steroids by telling you to taper when you've been told to wait till you're better by specialist drs treating your asthma. (Admittedly, said specialists don't seem that helpful at the moment, but A&E shouldn't really wade in 5 mins after meeting you and ignore what your specialist told you, unless it's completely crazy like 'give this drug even though patient is allergic'. )

I have been in and been treated for severe attacks with ok sats, no wheeze (often, during an attack, because I wasn't moving air that well at all), and my peak flow is just weird. The way I tend to tell if I need to do something is that it usually initially responds to the reliever, then it drops, and starts lasting less and less time until it's just stuck in low yellow zone. For other people it's easier to see as their peak flow drops neatly. Do you have a sense of how yours usually behaves (eg do you usually find it drops in an attack?) This post may be helpful if you aren't sure: healthunlocked.com/asthmauk...

Regardless, you shouldn't be relying on peak flow alone (nor should A&E be telling you to). When you say you're speaking in complete sentences, do you feel comfortable completing a reasonable length of sentence when you attend A&E? I ask this because I've felt like I can't do that during a bad attack and been told I can by people who aren't observing it properly and/or have misinterpreted the guidance. The guidance is meant to be 'able to complete sentences in one breath', but it seems to be common for this to be misinterpreted or written in quick reference guides as 'uses/speaks in sentences'. This makes it sound like it's about your brain's ability to construct a sentence, rather than your lungs' ability to say it out loud.

I would strongly recommend you give the Asthma UK nurses a call on Monday, as they have time and expertise to talk through your situation and hopefully advise on practical solutions including what to do about steroids. It's not guaranteed they can help, but I think they're probably going to be more use than your other options currently! AUK helpline - 0300 2225800 M-F 9-5, AUK WhatsApp - 07378 606728 (would call if you can, I think it would help for them to be able to hear you talking).

Meanwhile though, regardless of what your peak flow is doing, please do get urgent help over the weekend if you need it. If you are struggling to speak and/or eat (even if you can get out sentences but it's hard and you can't do it in one go), your reliever isn't helping at all (even if your peak flow doesn't seem too bad or hasn't dropped below 50% of your personal best - not predicted!)- then please do go to hospital/call an ambulance.

I do understand about rubbish A&Es being unhelpful, I have been there many times, but equally you can't ignore that. It may help for you to write down a summary of how you usually present - eg if you don't wheeze, say that, say you're under care of asthma clinic, say what your best peak flow is, especially if it's a lot higher than predicted. If your sats don't tend to drop, say that. This post may help - Emma has created a summary template to apture the information: healthunlocked.com/asthmauk... I find it often does help in A&E - not always but often better with than without. Is there another option you can go to for A&E, or is that the only one you can reach?

Leigh2305 profile image
Leigh2305 in reply to Lysistrata

That’s exactly how I feel like I’m in this limbo. See your gp. Get medical attention. Go home.

Yeah they say I can speak in full sentences yet I’m wearing a mask and don’t feel I am. I just think they can’t see me taking quick breaths. I sing a lot so I assume that why my peak flow is really high as when I’m in the car I sing really loud 😂

I suppose on the plus side it means that it will take me a lot longer to reach a really critical asthma attack compared to someone who blows 400 on a good day.

I’m hoping once my new inhalers take effect it ends all this with my chest because between flare ups my chest is great and following from this flare up my peak flow will probably increase again as I’ve noticed after each course of steroids that about two weeks later my peak flow goes up by about 10-20.

I rang a nurse at asthma uk. And she couldn’t really help much further as it’s again seek medical attention because I definitely shouldn’t be using my inhaler that much.

It’s also masking it. When I arrived at a an e I had used my reliever 17 times within the hour. But I was just left on a bed. They came back and checked my blood pressure as it was quite high. I feel like a and e think I’m either faking or just being dramatic. Like yes I blew at my 80% which is higher than a lot of peoples (580) but that was after 17 puffs of I was fine it should have been up to my 90-100% after all that not at 80% 🧐

Lysistrata profile image
LysistrataCommunity Ambassador in reply to Leigh2305

That's very frustrating! Also sorry the AUK nurse couldn't help much. Did you get in a good chat, or was it more framed as a response to a specific question? It may be helpful to give it another go and frame it as 'I'm being told different things and I'm aware I need medical attention, but when I try I don't get anywhere', for a more open-ended discussion.

Re peak flow - I would give Emma's peak flow post a read if you haven't already. Often I think they forget about maintenance and actually being able to do anything. 80% of your best after multiple puffs would still be green zone so suggests you're responding to reliever, but if it drops as soon as you get up and move around at all, or 10 mins later, that's a sign something is going on.

Having a high best also doesn't mean you're less at risk of a severe attack. That risk is due to a range of factors, but you can absolutely have a high best and still have severe attacks, just as much as if not more than someone with a much lower best peak flow who has good asthma control. There are people on this forum who have better than predicted peak flows and have had bad attacks. (I guess I'm one of them with PB 630 vs predicted 450. I don't see myself that way partly due to things being minimised in clinics, and not having been to ITU,. but I have managed HDU in the past, had other attacks needing plenty of treatment, if not 'critical' and I don't think my peak flow has ever been that awful in these attacks. The worst it's been was in a middling attack compared to others).

I do think some drs seem to have the impression that you shouldn't come to hospital with asthma unless you are turning blue and on the floor. Actually the idea is to treat before that to avoid it happening...

Peak flow doesn't take account of the small airways, and also asthma is variable; you might be at eg 600 on a good day but it doesn't mean that can't change rapidly. As someone who played the oboe as a child and has a personal best nearly 200ml more than predicted, I find many medics can be really fixated on peak flow instead of using it in context. If you're higher than predicted they do tend to be likely to assume you're ok, even if numbers are bad *for you*. Variability also seems to be something they forget, despite this being a hallmark of asthma.

Leigh2305 profile image
Leigh2305 in reply to Lysistrata

Yeah she was really helpful but obviously due to my situation could only advise.

Im thankful that I haven’t had a critical asthma attack or needed any admission for it at any point and hoping that it’s the same for my future.

I also want to know for definite like at what point do I stop taking my relievers from medical professionals. Like what is the maximum amount to be safe at home using unmonitored. Which feels dramatic but last august I was sent home with my pulse rate at 140. I’m not a medical expert but I do feel that’s bad to be not being monitored.

I definitely feel that’s what they think. Even when it’s 450. For me that’s really bad. But for my age and height that’s expected. My current asthma nurse at the gps suggested that my PB was too high and I should have someone check my technique. I had done 635 in my spirometery the week before following a flare up and blew the same myself. It seemed to stop that conversation going any further

Hi Leigh, I cant add anything to whats already been said but just wanted to wish you well. 👍 Colin

You may also like...