What's your experience of coming of steroids

[Autolupus]

So I have my rheumatology appointment next week so hopefully will get a better understanding of what's going on. In the meantime I am on mycophenalate and a weaning dose of prednisolone for eye inflammation, started with 800mg in December and am now on 2.5mg before stopping in 2 months time. However, I could sleep all day at the moment and feel exhausted all the time. Not sure if this is the effect of the steroid reduction or something else. Anyone had similar?

[PMRpro]

You are at the stage of requiring the adrenal set-up to produce cortisol again - while you are on any steroid dose above about 7mg/day the natural production of cortisol, which is essential to life, is suppressed as the body uses the pred for that purpose. As you taper the dose and get to this level the HPA axis (hypothalamus, pituitary, adrenal set up) has to wake up and get its act together. It doesn't happen overnight and from about 7mg a slow taper is necessary to keep you functioning and safe while it happens. Some people take longer than others but after only 8 months it shouldn't take too long - however, it is more likely to be months than weeks. Many doctors appear to be unaware of this stage of pred withdrawal - even rheumatologists who you would think should know better as they do use pred a lot!

The symptoms of secondary adrenal insufficiency can be unpleasant and fatigue is the predominant feature. It will improve and I personally would ask to stick at 2.5mg until it does improve - that is low enough to poke the adrenal function into life and also enough to keep you reasonably safe for normal day to day functioning. It may not be enough for emergencies or stressful situations - I'm at 5mg but after 14 years of pred and even a telephone call to the bank leaves me feeling shaky!

[Autolupus in reply to PMRpro]

Thanks, I've been on 5mg since end of April and felt good so this is a bit of a surprise 2 weeks in. Will push through it.

[PMRpro in reply to Autolupus]

From 5mg you would have been better told to go 1mg at a time. 5mg is a common dose for replacement therapy in adrenal failure - you should feel OK.

And be careful "pushing through it" - if you are feeling very unwell, become confused, faint, vomit, that could be the herald of an adrenal crisis and you need medical help immediately. 999 is good as paramedics carry hydrocortisone injections for treating such episodes. Waiting for a GP appointment isn't a good idea even if it is same day.

[Autolupus in reply to PMRpro]

Wow, didn't know that. Hopefully won't experience any of those but will act immediately if it happens

[Barbara17]

Hello. It took me two years to come off prednisolone. After I got down to 10mg I had to taper half a mg a month. But I did manage it and now only take short sharp doses if necessary.

[Autolupus in reply to Barbara17]

How did you feel as you reduced?

[Barbara17 in reply to Autolupus]

From 10 down to about 5 it was ok. After that I felt light headed and generally unwell for the first few days of each ‘drop’. We’re lucky in that we have a lupus nurse in Edinburgh and I spoke to her. She said I had to remember that each reduction represented a much bigger proportion as I took less and less of the drug. For example half a mg is only 5% of 10mg but it’s 50% of 1mg. This helped as I realised why I felt unwell. Sometimes I waited five or six weeks before the next reduction but I did eventually come off completely. With my consultant’s knowledge I now keep a small supply of pred in the house and if my skin starts to flare (I have SCLE) I take 5,4,3,2,1 mgs over five days and up to now this has stopped the flare. Please remember this is my story and I’m not a medical practitioner - it’s just the system I used and it worked for me.