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Sob symptoms after 5days of prednisolone and currently stepping down

Celie1 profile image
16 Replies

Hi hope all is well with you all.

During an asthma flare up which started 12 days ago I was given 5 days prednisolone 40mg daily and another inhaler (Atrovent and then replaced by Spiriva a week later). I normally need a 2 courses of steroids and step down to sort out the problem, but as I’ve had too many over the last 6 months the nurse decided to give me 5 days worth of pred and then step down by 1 every other day.

This morning is the second day of 20mg and I’m still short of breath. I also woke in the night with a cough and had to take ventolin (I don’t generally have night time symptoms). Should I just continue with the treatment and hope at some point either the pred or the Spiriva will work or should I take ventolin every 4 hrs to tide me over until I start to improve? 🤷🏻‍♀️I’m not due to speak to the nurse for just over a week. Thanks 😊

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16 Replies
twinkly29 profile image
twinkly29

I think I'd see how things go until Monday (in the hopes it settles down) but obviously phone 111 if you need to in the meantime but then phone your nurse or GP on Monday to discuss it.

Giving less pred because "you've had too much" isn't helpful thing to be told really. Ideally you'd have had none but if you've needed it then you've needed it. Remind me about secondary care....have you been referred? If not you need to be!

As far as weaning goes, I always get blips while weaning steroids and but it does sort of catch up eventually - but if you're still having issues tomorrow/Monday then you definitely need to discuss it with someone.

Celie1 profile image
Celie1 in reply to twinkly29

Thanks for the advice - I feel like I’m on here permanently asking at the moment 🤦🏻‍♀️. Would it be ok for me to take 4 hourly ventolin, probably just a sticking plaster but might help. Would it prevent it getting worse?

No not been referred as yet, I was told by the nurse we’d see how the Spiriva went and that a lot of her patients were given this by the consultant anyway. Also she said there was a big waiting list because of Covid. Also tricky because I’m with a temporary GP practice. You and Emma gave me some good advice to ask for referral through the GP.

I was looking back over my flare ups and I’ve had 6 courses (of a fortnight plus step downs) in the last 2 years and 8 months and probably before that. From what I know now, it seems that I should have been referred before now. I’ll definitely get onto it next week. 🤗

twinkly29 profile image
twinkly29 in reply to Celie1

Ah yes sorry - forgot about the temporary practice! But yes I hope someone will refer you - your proper home practice might on the basis of all your pred requirements and that you will be back there soon (you don't necessarily need to say when!) it's just that all this has happened while you've been away - but that AUK have said you should be referred. And as I said before the covid wait is not an acceptable reason. Besides, the Spiriva might be something a consultant would suggest but equally there are all sorts of other things and indeed tests to get to the bottom of things.

But good luck with the process because I know it's daunting and not easy in your situation.

Yes to ventolin - relieving the symptoms is definitely ok. If you're struggling beyond using it 4 hourly (or rather you need it more often) then seek further help but relieving the symptoms can help to bridge the gap, a bit like when starting a new preventer anyway.

Also ask anything you like - no-one minds in the slightest people seeking advice and particularly so when those asking are asking sensible questions and reading/absorbing the replies (of course people can choose which bits of advice suit their situation and that's ok...but some people do tend to ask a question, ignore all advice given (whatever it is)....and then ask the same question repeatedly...that's definitely not you! So ask away! We've all been there if we're not there now.)

Celie1 profile image
Celie1 in reply to twinkly29

Aw thank you. 😊. No, definitely will take advice, no point in asking otherwise 🤷🏻‍♀️.It’s also just good to be able to air worries and figure out what’s best based on what people say.

Yes that’s what I thought, it’s not just about meds but about finding out what’s wrong through tests and then giving the right treatment.

I’ll take the ventolin, it does help and hopefully will prevent an escalation.

Sorry I’m being a bit self obsessed 🤦🏻‍♀️ - hope you’re doing ok x 🤗

twinkly29 profile image
twinkly29 in reply to Celie1

You're really not, I promise! We all have times where we need more support, advice, space to share our thoughts. But then at other times we do that for others.

I'm ok....ish 😆. Currently in the middle of weaning my pred too which is never fun but needs must and all that.

Celie1 profile image
Celie1 in reply to twinkly29

Yes true., but thanks 😊 No not fun, but at least the end is sort of nearly in sight! 😅 Hope it goes smoothly x

Darceydoo profile image
Darceydoo

Tel Out of hrs if you’re worried, what’s your peak flow is it half it’s normal reading? Also what are your oxygen level readings? If it’s 92 you need hospital to check you over. Have you ever spoken to Asthma UK?

Celie1 profile image
Celie1 in reply to Darceydoo

Hi, thanks for replying 😊.

My peak flow isn’t generally a useful indicator for me as it doesn’t tend to move much even when I’m really having difficulty 😬. Think this is because my problem is in the small airways and I can still manage a ‘blow’. My SAT’ s likewise are usually ok too. I think 🤔 I must be what could be referred to as a unicorn! 🦄 😆. I have to go more on my symptoms, which are shortness of breath and coughing.

I did speak to a great nurse Claire, from AUK last week and she was really helpful, but as it’s the weekend I thought I’d ask on the forum, as I don’t seem a lot better than I was at the beginning. I know I’ll have to wait for my second inhaler to start working. I’ll use my ventolin to get me over the weekend as suggested by Twinkly, but certainly will get help as you’ve suggested, if I’m needing ventolin more than 4 hourly.

Thanks again. 😊

Idreamedadream profile image
Idreamedadream

I recently had an awful flare up where my chest was sooo heavy and chest pains so taken to hosp where they checked me over properly re my heart blood tests eventually discharged with prob asthma worse...I was still suffering so numerous calls to gp who referred me to respiratory nurse who I saw 3 times who diagnosed a virus which exacerbated my asthma...I was prescribed 2 lots of antibiotics and 3 lots of pred and then they changed my inhaler from ventolin(which in the end seemed to make it worse), to fostair which has helped but still suffering so then 2 weeks later the asthma nurse prescribed me montelukast to take at night which has helped a lot. Hopefully my asthma seems to be under control.

twinkly29 profile image
twinkly29 in reply to Idreamedadream

Ventolin is only a relief inhaler (a bronchodilator) so will relieve symptoms but not deal with underlying inflammation.

Fostair is a preventer inhaler (combined with a long-acting version on ventolin) so it gives regular steroids to deal with the inflammation - which is what all asthmatics should have really - and also the long-acting relief. Once this has kicked in, the idea is that you wouldn't need your ventolin very often but it will take about 8 weeks for the Fostair to kick in properly.

Just re-read your post and not sure if

- you started on just ventolin and then they gave Fostair as well (Fostair twice a day and ventolin as reliever)

- as above but Fostair twice a day AND as reliever (no ventolin)

- you were already on Fostair but they change that to be your reliever as well as preventer (in which case my burble above about different inhalers you probably already know! 😅)

But anyway I'm glad things seem much more controlled now with the Fostair and the Montelukast!

Idreamedadream profile image
Idreamedadream in reply to twinkly29

Sorry I didn’t explain myself properly.... I was on ventolin for a while but it seemed to make me cough n wheeze worse especially as I was using it more because of my virus and worsening asthma..initially I was given antibiotics and pred....more pred....more pred then saw respiratory nurse and given prescription for fostair then as still not right eventually montelukast.... it’s hard isn’t and I empathise with anyone suffering as it’s horrible but you need to be persistent.... I was on the phone a lot to the gp.... nearly every day! I apologised and they said no don’t be sorry you have to persevere and ring us that’s what they are there for..to try and help.So anyone out there just hang I there and look after yourself .

twinkly29 profile image
twinkly29 in reply to Idreamedadream

Ah so if Fostair is still kind of new then you should see even more improvement.

Glad you've got a good nurse and surgery who don't mind you phoning - I mean no surgery should but for places they do seem to put people off. It makes such a difference though when the support is there.

Celie1 profile image
Celie1 in reply to Idreamedadream

Sorry to hear it’s taken a while to sort out your asthma. Hope the Fostair works well for you.

Idreamedadream profile image
Idreamedadream in reply to Celie1

Thank you 😃

B_Asthma profile image
B_Asthma

I had a similar problem a few months ago. It was a cycle of antibiotics and steroid then going off before symptoms reappearing. My advice is to call 111 and speak with them.

Celie1 profile image
Celie1 in reply to B_Asthma

Thank you for your reply. I will do that if things get worse. At the moment, 4 hourly ventolin is keeping it under control. Hope you got yourself sorted 😊

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