Steroid withdraw

[Cherry14]

I have reduced my steroids and now I am not on it since beginning of march. I feel nauseous and the other day I was rushing around for a meeting and was feeling nauseous and sweating. I was like retching as well - is that anxiety? My eyes feel tired and sore and my appetite has changed - don't feel like eating as I feel sick? What do you think it is? Can stress cause this to?

[PMRpro]

How long had you been on pred before stopping and how quickly (or slowly) did you drop down the last 5mg?

What you are describing is classical adrenal insufficiency symptoms because your body has not been able to adjust its production of cortisol to balance the drop in the steroid dose. Corticosteroid is essential to normal functioning of the body. While you are taking pred, the body reduces its production of cortisol, in a similar way to your central heating boiler not having to provide more heat in a room where a wood burning stove is also being used.

If you are stressed your body would normal provide MORE cortisol but it takes some time for normal functioning to return and it may not be able to do so yet. The body responds with the symptoms you have described. I think you need to speak to your doctor and possibly you may need some pred or hydrocortisone in the meantime to cover for this and reduce the risk of an adrenal crisis which could make you very ill indeed. Unrecognised and untreated, an adrenal crisis can be fatal. If you become very unwell, don't hesitate to call 999 for an ambulance and tell them you have just recently stopped longterm pred so they know the potential risks.

[Cherry14 in reply to PMRpro]

I have been on pred since 2019 but been up and down with the doses. I had my appointment in December and told to reduce it so I was on 3mg. January - 2mg. Feb - 1mg. March I went off it. I am still on 1000mg of Mycophenolate and hydroxochloriquine.

[PMRpro in reply to Cherry14]

You have tapered that last bit very very fast - we tell patients to take 2 or 3 months at each dose on the way down, and 1/2mg at a time. The other medications are taking care of the disease process - but they do nothing to replace the lack of cortisol that your adrenal glands are not producing yet. You MUST try to get a GP or rheumy to listen to you about these symptoms and refer you as an emergency to endocrinology OR put you back on steroid cover in the form of at least 3mg pred or a suitable dose of hydroxycortisone. Otherwise you are likely to become very unwell with tertiary adrenal insufficiency due to long term medication with pred. How you tapered might have worked after 6 months on pred above 5mg, after 6 years at any dose, it was a risky strategy. The first link is to a post, the second to the leaflet. Please read the leaflet and take it to your GP for a start.

healthunlocked.com/pmrgcauk...

ese-hormones.org/media/ov4h...

[Cherry14 in reply to PMRpro]

Some days are okay but how long does it take to adjust. It been a month. I am wondering if its justbstress

[PMRpro in reply to Cherry14]

It can take up to a year after stopping pred altogether for it to settle down - and that is after a slow taper. The bad days are probably when you do a bit more are they?

[Cherry14 in reply to PMRpro]

I'm not sure I think it's stress like I'm a teacher and doing lots. The other day I and parents evening and and I was sorting books out and I was feeling sick - wandering if that's just anxiety. And I haven't been eating as much as I get a bit nauseous.

[PMRpro in reply to Cherry14]

Look for all the get-out's you want - but the most likely reason for the anxiety and nausea is adrenal insufficiency. It may not be - but on balance, it is what I would put it down to.

[Florence91]

I can't help wondering how quickly you have done this. I was advised to only reduce by 0.5mg per month and to hold the dose for longer if I became symptomatic. I can't actually stop them. Talk to your doctor please