Steroid withdrawal

[Guinnless]

Has anyone ever experienced steroid withdrawal, if so how do you cope. At the moment I'm feeling extreme fatigue and aching joints and body also nausea.

[Lysistrata Administrator Community Ambassador]

Hi, what is the situation with your steroids - how long were you on them and at what dose? Have you just stopped suddenly?

As you may well be aware they should be tapered and not just stopped. It sounds like this was done too suddenly and if you are below a certain dose you could be at risk of adrenal crisis. If you have a big drop but you're still above about 5-10mg of pred or equivalent it can be uncomfortable but not usually dangerous (unless you have say asthma and a virus all hitting you at once).

If you're on no steroids at all this is concerning and you should probably contact your GP asap about this. If you start to vomit or have other symptoms of adrenal crisis please get help asap - this link may help with the danger signs. addisonsdisease.org.uk/emer... (it says Addison's disease but applies to steroid withdrawal and other kinds of steroid dependence too.)

I also wrote a post about adrenal insufficiency which you may find helpful even if you don't have a diagnosis:

healthunlocked.com/asthmauk...

Again if you are feeling really unwell with this and you're not on steroids get help asap.

[ninelives in reply to Lysistrata]

Fabulous informative reply Lysistrata.

Have been on prednisolone for 16 years and unable to reduce .

It's a lifesaving medicine but long term not so great !

[looneyno1]

Hi, steroid withdrawal can be horrible and not always much can be done some people are just sensitive to it. I am one of those people. Right now I am weaning, I have been able to get to 13mg this time through sheer determination.

I get different effects each time they range from body aches, pain in my bones themselves, diarrhoea, extreme emotions/anxiety, muscle cramps, nausea, tiredness. Just to name a few and that’s on top of the Asthma flares.

I take paracetamol when it gets bad, I was referred to a dietitian who was helpful for changing my diet to help with the cramps eg increase protein, I was tested for vitamins and started taking supplements for the ones I lacked or increased my diet

I try to keep active as much as possible that also helps with my symptoms. Even if this is just a small lap around the living room. Any movement is good.

The main thing I have learnt is that each person is individual and that my experience may not be yours if something works for you then as long as it isn’t hurting you and your Dr doesn’t tell you to stop then if it makes you feel better then go ahead.

Also listen to your body sometimes it’s telling something.

And withdrawal is real don’t let anyone tell you otherwise it’s not widely recognised or talked about but you are not alone and you will get through it.

Hope some of this helps and you feel better good luck with weaning.

[hilary39]

Those symptoms of withdrawal are the worst.

I second everything Lysistrata said--I usually have bad withdrawal when I've tapered too quickly and I completely agree that it's urgent to be on the lookout for any signs of adrenal insufficiency. If you throw up or feel even more out of it, get to the A&E asap and ask for a cortisol test. If it's low, they should start you on hydrocortisone asap to get your cortisol back up.