tapering off steroids

[ccccc]

Hello

I'm currently tapering off 5mg Prednisolone, initiated a few years ago when I had Covid which was triggering my severe asthma. I don't need it anymore for that reason except I was diagnosed with adrenal insufficiency a few years ago.

Recently seen an endocrinologist and had a short synacthen test which did show some response (went from 25 before to 160 mol/l after) who has devised a taper plan, reducing by 1mg a month. I think this is bit fast as I've taken the daily Pred for 3 years so I've decided to go slower and reduce by 0.5mg a month (I have the 1mg tablet so it's easy to cut in half).

I recently split my dose to 3mg in the mornings and 2mg at 3pm to try and mimic my natural cortisol level (this is all from an NHS leaflet I found online my endo didn't even mention this, taking all 5mg in the morning was making me feel poorly...) so it's the afternoon dose I've reduced. I can't take hydrocortisone tablets as they've given me palpitations in the past so I'm just reducing the Pred with HC cover.

The endo doesn't seem to think I need my cortisol tested during the taper even though I'm conscious it can be dangerous if I taper off before my adrenal glands start working (I know with some people they don't start working at all).

Anyone else tapered off in this way, I'm keen to hear people's experiences as not getting much support from the endo at the moment.

[Tigerlils]

I’ve been on 5mg pred daily for four years and started weaning in January. It’s been managed by my severe asthma team. I’m currently down to 4mg and have been given the go ahead to get to 3mg by the summer. I’m stepping down in 0.5mg steps. I’ve had blood tests after each step to confirm my adrenal gland has responded, but it has been fairly obvious to me that it has worked because I’ve felt really unwell for the first week of each step down and then slowly recovered. My initial cortisol level was lower than yours. Hope that helps and your weaning continues to go well.

[Robo143 in reply to Tigerlils]

you have to remember, your body has to cope with changes in your adrenal levels, and has to re-balance out, it takes a long time, 2 weeks or more each time you step down. I done it after long covid, now I’m pleased I did, but it was hard going.

[ccccc in reply to Robo143]

very true Robo congrats on doing it, it's so tough isn't it. Did you get much help when tapering off?

[ccccc in reply to Tigerlils]

Hi tigerlils

That's interesting your asthma team is doing it I had to ask for an endo referral as my asthma team just parked me on 5mg. Well done for reducing down, so I take it your going down by 0.5mg a month? What sort of response is your cortisol showing? I've been on 4.5mg for a week now and feeling ok. I've just been given a leaflet about sick day rules and that's it.

[Tigerlils in reply to ccccc]

It’s more like 0.5mg every 6-8 weeks. I know my cortisol has improved but I don’t know the exact figures, just that it’s looking good. I’ve had really bad symptoms as my body has adjusted so I wouldn’t want to go faster. I haven’t been told anything about sick day rules!

[ccccc in reply to Tigerlils]

Ah I see, my endo sent me a taper schedule for 1mg a month which I know is far too fast, so I've just decided on 0.5mg myself. Sick day rules are when you need to double up the dose if you have a sickness bug or a virus as your body needs steroid to cope. I was taking 5mg in one dose in the morning for three years and feeling terrible, really tired and washed out a lot, so I recently split it to 3mg at 8am and 2mg at 3pm and feel much better as it matches your natural cortisol production better. I'm cutting the 3pm dose to begin with. I used the Pituartury Foundation endo nurse for advice, she is really helpful pituitary.org.uk/support-fo... Let me know how you get on with your taper. The GP has agreed to do a cortisol test in a few weeks but heard nothing off the endo.

[Tigerlils in reply to ccccc]

I’ve read about sick day rules on this forum before but neither my asthma team nor my GP have ever mentioned it to me. I had covid recently and there was no suggestion from any of the doctors that I might need to up my steroid dose!

[hilary39 in reply to Tigerlils]

Here's a good guide

addisonsdisease.org.uk/newl....

[hilary39]

Good for you! I'm jealous! I've got SAI from prednisone use and my cortisol has stayed abysmally low so I don't think there is an end in sight for me any time soon :/

I'd definitely push for routine blood checks to make sure you are doing ok and keep taking little updoses of HC as you go if you feel dizzy unusually exhausted (your normal low cortisol symtpoms etc).

If you are on Facebook, there is a group specifically about tapering for AI with great resources in the archives. It's here: facebook.com/groups/7967857...

[ccccc in reply to hilary39]

thanks Hilary, you never know what might happen, fingers crossed for you.

[lejaya]

Hi I'm currently in similar situation my cortisol levels were 17 in August. I am now seeing an endo and managed to wean down from 7mg in September to 4mg now. so 0.5 roughly I think per month. it has been very very hard but feeling better now so fingers crossed for synathen test in few weeks

[ccccc in reply to lejaya]

good luck lejaya, I find I have good spells and bad spells but even cutting back by 0.5 I feel a little bit more human.

[Thomas45]

Although it was for a different condition, Polymyalgia Rheumatica, I had a reducing dose of prednisolone. My GP allowed me to reduce at my own rate, as he said I knew my own body better than anyone else. While I was reducing from 30mg to zero, I always redi y less than 10%a time period. I used the dead slow, nearly stop method, not confined to any period of time. I was stuck on 10mg a day for 3 months.The method was to take 6 days of current dose and 1 day of new dose, e.g. Sunday to Friday inclusive of 5mg, followed by a dose of 4.5 on the Saturday. Ok would keep at that until my body accepted it, and then have 5 days at current dose and two, evenly spread, at lower dose. I didn't have to reduce in any set period,; I went at my own pace. Eventually , after 4 days current, 3 lower, then 3 at 5mg and 4 at lower, etc, until I was taking 4.5 on every day. As soon as my body accepted that, I'd start the reduction from 4.5 to 4mg.

Polymyalgia Rheumatica is an autoimmune disease where muscles become inflamed. The only treatment is a reducing dose of steroids.

When I had an exacerbation of asthma I'd be prescribed 40mg a day in addition to my Polymyalgia dose.

[ccccc in reply to Thomas45]

That sounds a good plan Thomas, I get impatient and want to taper more quickly but this time I'm being disciplined and doing 0.5mg a month. But I'm prepared to go even slower if that doesn't work. You were very patient to take it so slowly. Did you have any moments where you felt unwell during the taper? I find it hard to tell the difference between the side effects of the steroid and the lack of cortisol sometimes.

[lejaya in reply to ccccc]

I have the same problem telling the difference between side effects and adrenals not happy, I was only diagnosed with adrenal insufficiency in December 2021 so still fairly new to it, my endo cons is very good though and gave me this really good slow taper.