Recently suffered a severe exacerbation of asthma with a chest infection. The last time was in 2011 with swine flu. This time the doctor wanted me on 25mg/day of prednisolone for 5 days and then to stop. I requested a lower dose and I went on 10 mg/day. After five days I had improved but when I went to 5mg/day, the symptoms returned. The symptoms were severe restricted breathing with congestion/ severe, prolonged coughing until I could dislodge and cough up the phlegm and then it would start again with the congestion and asthma.
It's been a long time since I last had to use prednisolone and I am dealing with the GP and not a respiratory specialist (as it's hard to get in to see mine at present). I was surprised at the earnestness with which they wanted me to stop taking any more, even though I still had severe difficulty with breathing. Both wanted me to take 25mg - 50 mg daily and then stop immediately after five days without any consultation as to whether I was able to breathe without it. At my worst I couldn't walk without going into severe breathing difficulties.
I am aware of the dangers of prednisolone and the adrenal glands but if it's helping me to be able to breathe, then I would have thought that telling me to stop on a certain day without checking how I am going would not be best practice. However, it seems that that is what they have been taught to do.
Is this common practice in England?
I've started gradually going off the 10mg/daily as I am on the road to recovery but I was surprised at the change in method over the last 10 years. I would love to know what other people have done.
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Tugun
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I don't know if it's common practice but I do know there seems to be a wide variation in what doctors understand about asthma.
They used to be very free in handing out lots of steroids and then became aware of the dangers and stopped doing that. Which is good, but I think in some cases they're so focused on the dangers of side effects that they've forgotten about the dangers of asthma and have stopped considering how to balance the risk and benefit.
You shouldn't take more steroids than absolutely necessary, no, and adrenal suppression is serious. But undertreated asthma is also serious and I think they forget that sometimes and don't look at the big picture.
I don't take oral steroids anymore because they don't really work for me, but I remember this attitude. One of the frustrating things about it was that you could actually end up with MORE exposure to steroids if you kept stopping before it was effective. Whereas if a slightly higher dose for slightly longer was needed it would often be effective enough that you wouldn't have to keep going back on to sort it. A too low dose I would have thought could just expose you to steroids without really being effective enough to do its job.
I have to say I hadn't heard that 25mg for 5 days was an appropriate dose for an adult with asthma. Last time I was offered steroids, in hospital last June, it would have been the 40mg dose. I wonder if they have the wrong idea or information or are making stuff up based on their concerns. I have had some very incorrect information about asthma and why I don't need treatment for it delivered very earnestly (not necessarily steroids) and the person saying it will absolutely not be budged.
Often it's something like 'nebs treat wheeze and you aren't wheezing so they won't help' or 'your sats are fine so you don't need treatment for asthma' and they just won't understand that is totally incorrect and dangerous.
I might give the helpline a call and chat it through with them so you know for next time or if any issues reoccur this time. 0300 2225800 Monday-Friday 0915-5pm
I agree with you. I was just amazed that the doctor would tell me to take the dose for five days and then immediately stop without checking how I was going and then the second doctor said basically the same thing. They were both good doctors , but young. I thought, "Do you understand what I am saying when I say "I can't breathe? I am struggling"."
I knew that discussing it with them was not worth the air I had.
I am absolutely flabbergasted that someone would say,"... you aren't wheezing so nebs won't help". To be at the mercy of such ignorance would be devastating. I also have silent asthma so understand the despair of knowing you need help / help is available but it is being denied due to ignorance.
Unfortunately the two doctors I was seeing for the past 12 years (the GP and Specialist) are no longer practising so I am with a new medical clinic and with new GPs. I have only seen my new Respiratory specialist once - at the beginning of 2023.
I find Tamiflu works for me if I have the flu but often I then get a secondary bacterial infection in the lungs. One doctor wouldn't give me both an antiviral and an antibiotic as according to the doctor," You can't have both. It's either viral or bacterial."
Did you work out why oral steroids don't work for you? I would be interested to know.
Thank you for your reply to my post. It was very informative.
Regards,
Tugun
LysistrataAdministratorCommunity Ambassador in reply to Tugun
I'm not really sure why they don't work - though it may be because I don't have eosinophilic or allergic asthma. Or rather, I think I do have an element of that but it's not the part mostly causing trouble. What I'm not sure of is if they ever worked or just don't work now.
It is very difficult when people come out with completely wrong information and then won't listen if you try to push back. Particularly when you can't breathe well enough to really explain! Has been so frustrating, annoying and alarming to be 'lectured' by someone who has no idea what they're talking about - and for them to be in charge of my treatment!
Hi Tugun. I can only speak from my own experience. I am given a 40mg dose for 5 days. This usually starts having a noticed effect on day three. However, the “rapid” improvement continues for just over a week where it still improves but at a slower rate. (Improvement not only in symptoms but as measured by peak flow.)
Hi Troilus, I concur with you. 40mg, for 5 days usually does the trick. I find if I split it into 2 x 20mg, my sleep isn't affected so much. But we are all a bit different.
I recently read a review of Prednisolone use (wish I could find the link), not just for asthma, but the main argument was how can UK medics keep an overall eye on the amount of oral steroids prescribed for patients, as regular use over a long period of time leads to health complications, such as osteoporosis, adrenal insufficiency and other unwanted challenges. The recommendation was for a wholescale review of treatment if any patient had been prescribed more thathan 3g per annum. That's alot, 15 courses of 5 x 40mcg pd.
Anyway, it's been recognised that regular use of oral steroids leads to other health issues that we would want to avoid, if at all possible, including cataracts, brittle teeth, thinning skin, thinning bones, adrenal issues.
My doctor said that the 5 day, short sharp approach had worked very well when tested and that's why they moved away from two weeks of Pred with tapering. It meant asthma patients were consuming less systemic steroids. However, as we've read so many times on this forum, it doesn't suit everyone and it can mean that patients are having 10 days of 40mcg. And 2 courses of steroids in any year should see the patient referred to a specialist, if not already referred.
I'm a member of a US run Facebook group for AERD, an asthma linked disease, and I'm amazed at the high level of Prednisolone prescribing. That's just my view of a variety of posts by members from a variety of countries. No one appears to discuss the long term side effects of systemic steroids. Just my observation.
Most asthmatics I know are aware of the long term side effects of prednisolone and other corticosteroids. For myself, the last time I had prednisolone was in 2011 with the swine flu and it was only after I nearly died (just grateful I didn't) that I agreed to try prednisolone. I can't remember the time before that. When a doctor suggested that I no longer needed it and told me to gradually stop, I suffered my second near death experience with asthma. This was worse and I just thank God that it was not my last day on Earth. I knew I was still having difficulty even though the doctor couldn't hear it (I have silent asthma). I knew the dangers of prednisolone and was happy to listen to him, although deep down I knew I shouldn't have.
This year was unfortunately a deja vu moment from 2011. It came on suddenly after I thought I was getting better from the flu. I couldn't walk without needing ventolin and was so breathless and heavy with congestion that I was scared.
I saw the doctor and although I am fully aware of the risks (including that they lower your immune system which might make it harder to fight off a virus or bacteria), I was willing to try it. It did help me and I am breathing better (not out of the woods yet) and I am tapering down but I am also keenly aware of how this has helped my lungs. I tried to taper down about 5 days ago but my lungs told me they weren't ready but now they are.
Over the years I have have heard people on this forum discuss, thinning skin/ easily bruising/ osteoporosis etc but like most with a disease, they have to balance the bad side effects with the benefits. With asthma or COPD they usually need those benefits to survive. For doctors to make that decision only based on a formula is equally dangerous.
I am lucky that over the years I have managed without a lot of corticosteroids.
I looked up AERD. I have heard about aspirin and asthma. Over the years I have double checked but I am one of the lucky ones where aspirin doesn't make my asthma worse. Processed meats, soft drinks, perfumes, cold air etc do affect me so I steer clear as much as I can. My friends know not to wear perfume if I am giving them a lift! However unfortunately perfume is everywhere.
Asthma Australia has a paper on some research into oral steroids which seems to explain why it isn't so easily available. They do seem to have contact details and templates for an asthma action plan too.
How odd. It's always 40mg starting dose for me. Five days usually gets an exasperation under control but I often end up with another 5 days. I recently had a young GP look at me horrified at how much prednisolone I'd had and made me feel awful about the potential side effects. Ultimately though, I need to keep breathing.
Hi Tugan, I recently needed steroids to cope with a sudden exacerbation of asthma+bronchiectasis, I was told that my surgery now had anew protocol of thirty mgs a day for 5 days, then to phone them ( hahaha - you can never get through by phone!!!) If no improvement. Despite crackly lungs I wasn't given any antibiotics, but my sputum samples came back showing no infection. I now find it best to communicate with them via email as everything is in writing and I have proof of what I've told them. The receptionists don't always pass on messages to ththe doctors accurately.
I know that yellow sputum doesn't necessarily mean infection but it frustrates me that the sputum samples come back negative.
Regarding testing, two years ago I tested negative for Covid even though I was sure that I had it. Three days later when it got worse, I tested positive. The initial false negative was simply because there wasn't enough viral load to test positive.
I work in a hospital setting, pediatric floor. A 5 day course is what is used in the emergency room and hospital setting for a quick burst to break an exacerbation of reactive airway. It is hoped that that is enough. For those that are prednisone naive, it is. For chronic lung conditions, it usually is not.
Speak with your doctor about your previous experience and treatment with prednisone. Hopefully you can get more, if needed. I used to have to do a 12 day course : 40 x 3 days, 30x 3 days, taper every 3 days etc.
My "sick days" note says 40 mg a day for 5 days, then stop.
I think the docs' thinking was that if you feel bad after 5 days and need more prednisone, you won't be able to reach them right away to report (they have a firewall of secretaries protecting them from those pesky patients). So they expect A&E to handle it. In my experience with all my consultants, no matter how good the ywere, the feedback was difficult. Leicester (Glennfield) had a nurse email who could advice within 24 hrs, but would not issue additional prescriptions -- prescriptions were up to the GP (who also could not be reached quickly). So I would just end up going to A&E if I needed more prednisone "right now" -- I would drive 30 min away to a quieter one, or call A&e if I was too sick to drive.
The 5 day course of Prednisolone is standard and the expectation is that the patient can access their GP if further treatment is required. A recent forum discussion on GP access highlighted how varied the service has become. The doctor should say that they are willing to see their patient if the initial treatment hasn't worked as expected, and given that the initial treatment is a 5 day course, I would expect a same day appointment or phone call to assess next steps. There shouldn't be any delay in treating an asthma exacerbation or attack.
My own GP will never suggest a follow up appointment, but a couple of others at my surgery are very insistent that I "come back if I feel things aren't improving or getting worse". I must admit that the first time I heard a GP say that I was really taken aback.
I've learned not to wait for an invite and will follow up for further treatment.
You're right - a same day appointment or phone call as a follow up - possibly on the fourth day, would be good clinical management.
I couldn't get in on the original day I phoned. It was a three day wait. It was only when I said that I would probably have to go to hospital that they squeezed me in for the next day for which I was very grateful.
I always make it clear to the receptionist that my asthma is worsening and there's never any need to negotiate (thank goodness), they arrange a same day phone appointment and if the nurse or doctor who calls me back thinks they need to see me, they ask me to pop in the same day. I must admit that this service is dependent on a morning call to the reception. If necessary, I would use the 111 service.
I think the pandemic has brought about alot more telephone appointments. When I've had to go into the surgery in the last year, it's almost empty, whereas before covid it would be very busy. I count my lucky stars that I've been able to access treatment for my asthma and a couple of other recent issues very promptly.
I generally think it depends on who you see, my GP suggests 30mg for 5 days but my asthma specialist says the amount they recommend for asthmatics is to take 40mg for 7 days, they’ve now put it on my asthma plan so the GPs follow it.
Hi there- this is really interesting because the max mg I’ve been given was 20 but mostly I was on 10mg at my worst. Like some people have said- it’s frustrating because I ended up having multiple different courses of steroids in the end because the doctors won’t listen to you! You said you have silent asthma-so do I! I’ve found it strange that even specialists just seem to forget that it’s a thing? They all seem to listen to my chest and when it’s clear just say that I’m fine. Have you been able to get round that?
Unfortunately, no I haven't been able to get around it. I've recently had to see new doctors because my previous ones have retired. The young doctor I saw was practically begging me to stop the prednisolone. I knew that I was much more serious than he realized so I determined to take it as long as my lungs needed it and then taper off. I was just grateful that I had enough tablets to do that. I tried to lower the dose at one stage but then ended up sitting all night with difficulty breathing. I am now off it completely. If I had gone on his timeline I would still be struggling to breathe.
I have also found that when you try to get them to understand, they think you are exaggerating. The only thing I can suggest is to try and find a doctor who will listen and then stick with them. Another idea would be to get the specialist to write a letter to warn doctors that your silent chest doesn't mean that you are not experiencing an asthma attack. Show each doctor you meet the letter and have it available if you go to hospital.
I would like to (but not really possible) get them to sign that they have read it. I had the unfortunate case where I wrote a letter concerning my aunt and discovered that it hadn't been read. Also no one ever seems to pass information on to the next nurse or doctor.
As an aside, I wrote my stepdad's radio station in large writing on a whiteboard on the wall next to his bed. The nurse who was looking after him ... and only him..... said she didn't put the radio on as she didn't know his station. When I pointed out the whiteboard she said, "Oh, I didn't read that". She'd been in the room for more than four hours!
I can't imagine 10-20mg maximum (Vs a maintenance or reducing dose) is going to do much for asthma. It's not even as much as the paediatric dose. They need to check the dosage for this kind of thing instead of freestyling, unless there's a specific reason a particular patient is on a different dose eg as decided by a specialist - obviously in that case they should be cautious about changing it.
The 'no wheeze no asthma' myth/attitude is an incredibly persistent one. While not all doctors/other healthcare professionals think this way, too many of them do and it's very difficult to persuade those who think you have to have a wheeze to have asthma that actually this isn't the case. I also think some of them are just better at listening to chests than others and are better able to tell when no wheeze is because the whole chest is quiet, Vs 'it's clear which is good!'
It's particularly difficult when they are actually senior respiratory doctors (yes, they also can believe you need a wheeze for asthma) because they are most likely to insist they know best. I've seen a senior respiratory doctor who apparently didn't know cough was an asthma sign. Another one told me I made up no-wheeze asthma and the worse your asthma the louder the wheeze (can't remember where but there's a set of asthma guidelines which specifically say that is not true. To be fair, guidelines and quick reference guides on asthma are often confusing and don't help).
Two to three days after I went off the last of the prednisolone, it came back again not quite as bad but close. Before I was on both antibiotics and prednisolone, so I went back on another course of antibiotics only to see if it was the antibiotics or the prednisolone. Even though there was slight improvement on the antibiotics, it looks like at the end of this course, I'll have to go back on the prednisolone. At least now I know that antibiotics aren't necessarily the only answer.
Hi, I need to update this. At present I am on a stronger antibiotic without the prednisolone. This has definitely helped and I seem to be getting better. Probiotics are definitely helpful with this one as it interfered with my gut.
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