What symptoms have people experienced on com... - Vasculitis UK
What symptoms have people experienced on coming off Prednisone after a long period of time.
I think it depends on why you were on pred and how you reduced the dose before stopping altogether.
In PMR (for example) even from the start reducing can lead to an apparent return of symptoms - because steroid withdrawal symptoms are often similar to the symptoms of the illness you needed the pred for in many cases.
Reducing should never be more than 10% of the dose you are on at the moment, in some cases it has to be even less because people are so sensitive to dropping their dose. That means not more than 1mg at a time around a 10mg dose - but at 5mg that means 1/2mg at a time and below that even less.
If you can avoid those pitfalls, once you get below about 8mg/day you have to go slowly because the adrenal glands have to start producing cortisol again and sometimes that takes time. Some doctors like to keep patients on 5mg for a few months - it seems to allow the body time to catch up. If you rush the reduction at that stage you are at risk of the symptoms of adrenal insufficiency which can include:
fatigue (lack of energy or motivation)
lethargy (abnormal drowsiness or tiredness)
muscle weakness
low mood (mild depression) or irritability
loss of appetite and unintentional weight loss
the need to urinate frequently
increased thirst
craving for salty foods
If this is ignored or you are under stress at the time you can become very ill so you would need to see a doctor.
Since you didn't give any other details this is all I can offer as help.
Hi PMRpro,
Regarding getting "symptoms of adrenal insufficiency" as you drop below 10mg, As well as CSS I also have Addison's disease and take 25mg Hydrocortisone (HC) spread throughout the day (10/10/5) to maintain my cortisol levels.
So since my Prednisolone for CSS is above 10mg at present .. it is 11mg, I stopped taking the HC some months back, But when my pred is down to 10 I will have to restart the HC.
So that means it doesn't matter if I reduce at > 10% rate since the HC creates the correct adrenal/cortisol level and I will not suffer from these reduction symptoms. Is that correct?
Any comments on this?
Thanks .. Jon
To be honest - I don't know. You certainly shouldn't have the symptoms because of the adrenals lagging behind so you don't have to worry about becoming ill with an Addisonian crisis, that's covered. However - the 10% bit is also said to be applicable at higher doses so it may be simply a dependence question, i.e. it is a physical effect of the pred in the tissues and if you change it too much at one go then you will feel ill in some way. Some people don't have any problems anyway - everyone is different in how they react - but there is no way of knowing in advance which group you belong to.
A bit of a search brought this up:
jpsmjournal.com/article/S08...
and it seems to suggest that they think there is something else besides the adrenals that is involved but they don't know what. I don't know if your medical science knowledge is up to it - it is a bit heavy! They do seem to think there could well be an increased need for pred on the part of the cells just because they have been used to it - and that would mean you would still have problems if you took too big steps down.
The reduction I suggest would mean you could continue to reduce continuously at a rate of about 1mg every few weeks if you started at 1 day new/3 days old and that is reasonably fast but reducing the risk of withdrawal problems - whatever they are. It's an interesting conundrum - I'll be interested to know how fast you go and how you get on.
PS - I can't remember - are you the scientist? If so - sorry about querying your ability to read the paper!
Dear archie2,
First of all, in answer to your actual question-, I haven't a clue. However, and the reason that I have 'answered' you, is to say please, and please again, do be carful coming off Prednisolone, or indeed any steroid. The reason(s) I say this are firstly you become 'dependant', on them- no you are NOT addicted in the way that you would be to heroin (or similar)- it's just that your body slowly loses the ability to make your 'own' steroid. So if you, like me, you have been taking steroids for many years.......I am however still alive, so some 'steroid dependency' is a small price to pay! Please do check with your doctors/consultants and good luck.
Best wishes AndrewT
Andrew - Have a look at the response I've written to Jonty too - it does appear to be a bit more than just the adrenals being slow at catching up on making cortisol judging by the reference I quoted - it applies at well above 10mg as well so my feeling it was something different was confirmed by this reference. But you are absolutely right about going slow to avoid the pain and discomfort of dropping too quickly, not to mention the risk of possibly being quite ill once you get below about 8mg.
Hi Archie I have CSS and have been coming down from pred for two and a half years. I am currently on 1mg a day. It has been a combination of 1mg a month or every six weeks to about 6mg and then a half mg every one or even 2 months. It's a case of very slowly, listen to your body and if you get any infection wait for a while.
For me the pattern has always been I reduce my dose and then after about a week I feel more tired than usual, get more aches and pains, get ulcers in my mouth and can feel a bit run down. After a couple of weeks that passes - then I feel normal for a couple if weeks then I drop gain. However if my body isn't recovering I wait for a while longer before reducing. My consultant explained it to me that your body often does feel the impact and gets kick started into producing its own steroids. Best of luck and you need to be patient
Thank you all for your kind responses.
I've had WG since Jan 2012 I am currently on 2.5mg of Pred. On alternate days I am
Due to come off altogether in one weeks time, having initially being on 80Mg per day.
Hopefully the side effects will be minimal.
Thanks again for your support.
Archie
Jonty do you mind me asking how you got diagnosis of addisons ?
