Recently ive had a two week course of steriods from my new amalgamated practice , it was 3 surgeries in the same building so consultations ( over the phone) are a hit and m8s whether you get a doctor that knows you , this one unfortunately didn't, he said i didnt need a tapering off so left me with a sudden drop from 38mg per day to 8mg , the shock to the system 48hrs after losing the extra 30mg was quite obvious, fatigue dizzyness a little nauseous aching bones l9ss of appetite but the dizzyness on standing up or moving fast ( well fast for me lol ) is quite profound, i do have a rescue pack which i will start tapering nyself with if i cannot get through to the surgery or copd nurses today.
I will say to anyone who has a prolonged use of a higher dose of steroids to ask for a tapering regime , i blame myself really i should have been more assertive with this new doctor but we live and learn
Im only putting this out here for information purposes, i hope it will help others avoid what ive been going through
Written by
soulboy118
To view profiles and participate in discussions please or .
Dear me Dave, what a silly man that doctor is. He needs to research tapering down of steroids and get up to speed. Hoping you feel better soon. Xxx❤️💜🥰
Thanks carol im sure they WILL get to know me ,politely of course but really he spent most of the telephone conversation reading my notes im surprised he didnt put me on hold and play some awful generic jazz music to sooth my soul lol x
I’m not a Dr,but if I was you, I’d taper down with your rescue pack.
It sounds as though he perhaps didn’t read your notes properly ?
I mostly manage my own health conditions along from advice with Rheumatology and Interstital Lung Disease advice lines.
If I try to get a phone appointment with GP,I there is only P1 Doc who knows me,so that makes it easy,otherwise I get a doc who doesn’t know me.one Doc said “ oh you’re on a lot of tablets “ I didn’t get the advice I wanted/ needed.
I don’t want to have to be self managing,but I have no choice.
I’ve been trying to get an appointment with the main Doc for 2 weeks,apologies for rambling on.but your post rang a bell.
I hope you manage to sort it out today,as it’s Friday x
This is just a prefect example why being told your notes are on computer so can see any gp is so, so wrong. I am slowly building up relationship with new GPs at practice but would be impossible for them to read all my notes before appointments. Even in a summary version. Is vital with those who have chronic often complex medical conditions that we are able to see same couple of GPs at all times.
I have heard this before from friends in the U.K. it is ridiculous. I think they just don't bother or is ot cost saving? They don't know what it's like to have these awful withdrawal symptoms. Here it's ALWAYS taper. No doctor worth their weight would suggest not tapering. Just so very nonchalant to the needs of patients. xx 😔
Hello Soulboy118, Dropping like you had to will cause all sorts of problems and the doctor should have known this. In cases where you have only been on the steroid for a couple of weeks you still need to taper off. I’m on 30mg till Monday and will go to 25mg for a week and then 20mg which is my base. If I want to go down further then it’s a whole different game with alternating lower doses over many weeks.
Morning soul boy my word what an experience.I have been on prednisolone for 18 years now and saw my respiratory consultant last week.
Despite being on them for years its easy to get complacent.I know you were on a relatively short course but it seems as if you had a a rough time when tapering down.
A previous GP used to try and reduce my dose down too quickly with similar symptoms to those you had.I absolutely agree with you to have a clear tapering regime in place .
Please do seek medical help via a and e or the out of hours gp
I dont want to cause you concern or distress but am worried about you .
Delighted you are ssing someone today --hopefully you will get clear guidance cant believe that you were left to fend for yourself --thank goodness you didnt have an adrenal crisis
Gosh that sounds dreadful, never come across that before, I’m tapering down from 7.5 maintenance dose and have been instructed to go to 5 mg for 2 weeks then 2.5 for 2 weeks. Hope you feel better soon!
I’ve experienced this too. I’ve been a long term steroid (10mg a day) user for many years, with occasional 40-60mg daily for chest infections. From the start drs from my surgery just told me to return to 10mg without tapering, but because I always have steroids in my medicine box I have been able to taper them, but it’s a shame that some drs are unaware of the dangers of just stopping steroids!
Infact my new steroid alert card(theold one fron 2006 now illegible) goes into detail on the back of medical treatment for adrenal crisis -I had got complacent re prednisolone ,not having my meditag up to date or a current steroid card -got well and truly told off by respiratory consultant last week.
Cant believe that some doctors are so complacent or unaware of the possible dangers of tapering steroids too quickly.
That’s reminded me - I need to update my meditag. Since the start of Covid I have rarely been out and have got out of the habit of wearing my tag. On the subject of steroids, I’ve found that some drs and dentists are unaware of the fact that if you’re steroid dependent you need to up your steroid dose if you have surgery, or even have to take to your bed because you’re unwell.
I was given a booklet with a very strange title when I was first diagnosed but it tells you what to do in different circumstances. My gp took a copy of it for reference, he’d never seen one before.
When I was first put on steroids in 2004 I wasn’t given any information about the down side of long term steroid use. I got them because I had rheumatoid arthritis and it enabled me to carry on working. Then in 2012 a lung disease and severe asthma reared their ugly heads so the steroids continued. I now have cateract, because of the long term use of steroids and I’m pre diabetic, also because of the steroids!
Bless you -am now also diabetic from steroids and have other issues from them as well.But have had 18 years I shouldnt have had ,seen my children grow up and expecting another grandchild this week.So feel very blessed!
We are so lucky to have such medications available arent we.
Hopefully more can be done to highlight the problems some have of having their doses taper ed to quickly after an excerbationon of underlying illness.
I bet you’re really excited, waiting for the birth of your newest grandchild.
I also am thankful every day for the medication that keeps me mobile and able to breathe. It enabled me to continue to work in a job I loved for longer than I expected.
I’m on 25 different meds so I would expect there to be side effects, but it still gets back to some drs in the medical profession not understanding the dangers of steroids.
I hope all goes well with the birth of your grandchild.
I’ve come off long term steroids twice and taper very slowly. The problem with doctors is they’ve not had to come off steroids themselves or they wouldn’t tell you to do things like this. I hope you manage to successfully taper your steroids and feel better soon.
I don’t have your experiences, but as born with rare condition PCD, have problem with lot of GP at my group practice. Fortunately found good consultant by paying to look on line at all respiratory consultants in my area. Been well worth cost and effort, she’s very good, can contact her secretary when need her guidance at which antibiotics I should take for flair ups etc. saves me having to trust random doctors advice. Good luck with managing your condition. Jean
Ive been on 10mg down to 8mg now but thats took nearly 18mths to complete , recently though ivd had two exasabations in quick succession so that may have caused this quick drop in adrenalin production by my own body, i will sort it TKL i always seem to do
Oh wow Dave, is it like a withdrawal then? How can we trust the current state of the NHS when they dont really know what they are saying. Im not on long term steroids ( Mollie the cat is she gets a monthly injection to keep her alive in a way) but tapering off surely needs to be more specific in how much you taper so the effects are not noticeable. I have never met my GP been with them nearly 2 years! saw the nurse after i asked for a rescue pack and they told me to come in as i shouldnt be getting them this often - ridiculous! sent me for an xray same day but nothing happened from it. I now order a rescue pack every two months with my prescription and no one says anything?
Just had bloods done kate so hopefully they can get to the botyom of it , i hadnt heard of steroud withdrawl but i certainly know about it now, at the moment though im fetting mixed diagnosis issues ( nothing unusual in that) , its time to sot back wait until i actually see a a&e doctor x at least this is a heads up for your cat and yourself i put your cat first because i kniw you do lol
it’s incredible!!! I’m now worried about Mollie - she’s got lung cancer or tumour not sure which and I’m keeping her alive with steroids and antibiotics- although if she wasn’t on them she would deteriorate like two weeks ago.
I’m wondering whether to change gp as I’ve moved but by the sound of it yours isn’t much cop either
Now the cold weather is coming my breathing gets worse but omg what do we do
We do what we always do kate , look out for ourselves, if we accept our new relationships with our doctors and its working then fine but if not change doctors but sometimes its better the devil we know , as to moie id just make sure her meds dont suddenly run out , mollies supply should be classified as critical meds , we al must look after each other these days kate
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Clinical Pharmacist - I'm quite cross!
Nebuliser Replacement Masks
BACk IN HOSPITAL AGAIN
Phyllocontin my story 
