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On prednisolone tapering down! Feeling tired

(4 Posts)
Audi10 Fri 01-Apr-22 12:59:37

Anyone tapered down from pred, after being on them for several years? Having first blood tests in 3 weeks to check how I’m doing. Only been trying for one month and was going ok but last 3 days not so good having heavy legs, and tiredness through the day! No change in my sleep though never ever had problem sleeping!

Ali23 Fri 01-Apr-22 22:53:40

My OH has been tapering down for months now. He was following a pre-set pattern of tapering and was given an advice sheet to look out for signs of adrenal insufficiency. He has had to stop tapering at 3mg... less than this and he really suffers from the tiredness. If he’s ill he has to automatically bump his dose up.
Do you have a protocol to follow? I would talk to whoever is supervising the tapering down ASAP.

Audi10 Mon 04-Apr-22 19:25:41

Yes, Ali23, one mg, every 3 months! Been on 14 years! I was on 5mg maintenance dose, and I step down like I said 1mg, I’m having blood tests every couple of months to see how I’m getting on, hopefully I can come off, but it will take a very long time I think especially if feeling really tired as I was the other day, but today although I haven’t really done that much I’m feeling less tired! So I’m just listening to my body and taking one day at a time

Candelle Tue 05-Apr-22 11:52:44

Yes, Audi10. Was on 20mg and now on 15mg.

Go into a website named 'HealthUnlocked', where there are forums on many many conditions. HealthUnlocked.com.

My problem is PMR and if you look this up in HealthUnlocked you'll come across the PMR/GCA organisation where there is the most fantastic help on tapering.

Check out their FAQ (frequently asked questions) and all the information you could possibly need regarding tapering prednisolone is there.

In a nutshell, the idea is that you can taper a few mg at a time until you reach 10mg but below that you have to be really careful. Your adrenal glands will not be working and need to be jogged into action once more but if you taper too fast you could go into adrenal crisis.

Ahh, I have just realised that you are already at 5mg. Your adrenals should be beginning to work about then (around 6mg apparently).

There is a system named 'Dead Slow Nearly Stop' so, known as DSNS which may be useful for you (all this information is on the PMR/GCA pages).

I hope you find the information you need, it is really the most wonderful website!