Steroid tapering

[Ambrosian]

Has anyone else had severe side effects when reducing their steroid dose? I was on 5mg prednisolone a day for at least seven months and reduced to 4mg a week ago. Feeling very unwell especially overnight which is the furthest point in any 24 hours from taking the steroids. I realise there will be a delay before my body compensates by making additional cortisol itself and I may have to grit my teeth and get through that. Any ideas on how long the adverse reaction might last?

[BritishLiverTrust3 Administrator British Liver Trust]

Dear Ambrosian,

If you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

We also facilitate a range of virtual support groups for people living with a liver condition. Our genetic/autoimmune group in March will be a Q&A on medication which you may find particularly helpful.

You can register to join here:

britishlivertrust.org.uk/vi...

Best wishes

British Liver Trust

[Marydel63]

hi I know for myself it is tough. Tapering and you should call GP talk with someone sometimes tapers need to be adjusted to how you are feeling. I could tell if my taper was too fast because I would feel just lousy mostly in my hips legs hard to explain but I can feel my body doesn’t like it.

but call nurses line maybe for some advice.

Hang in there

[Ambrosian in reply to Marydel63]

Thanks for your reply. On a previous occasion my dose was lowered and then increased again. But I'm keen to get on the lowest possible maintenance dose as soon as I can because my consultant says the longer you're on them the more pronounced their negative effects become. Steroids are a very blunt instrument but they can save your life and they're the best we've got at the moment.

[taichikung]

Tapering from 5mg to 4mg is a very big drop. I have polymyalgia and our tapering is usually half an mg each step, especially when under 10mg daily. There is a method called DSNS Dead Slow Nearly Stop which goes through the steps to take when trying to taper.

[Ambrosian in reply to taichikung]

I was originally on 40mg a day, dropping by 5mg every 7 days and then staying on 20 mg for quite a long time, then 10, then 5mg. The dose was put back up for a while because of side effects. It probably depends on the nature of your condition. Fortunately, although my form of hepatitis can make me feel ill it doesn't usually cause pain. My consultant did say it has to be lowered extremely carefully with monthly blood tests to monitor liver function.

Thanks for your reply.