Tapering steroids: I'm down from 20mg to 6mg over a... - PMRGCAuk

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Tapering steroids

SusieQQ profile image
9 Replies

I'm down from 20mg to 6mg over a 2 year period - so, a slow taper. However, I'm feeling very odd - tired, tearful and a bit remote. Could this be down tobthe taper? Everything else in my life is tickety-boo...so I'm at a loss yo understand my current state.

All advice gratefully received.

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SusieQQ profile image
SusieQQ
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9 Replies
SheffieldJane profile image
SheffieldJane

I recognise the collection of symptoms you have. Maybe your Adrenal Glands are beginning to realise that they are required to get to work. I feel better if I have a planned nap and a walk each day. I try to avoid stress too, I don't seem to have much resilience, a bit of a brooder. Well done on the gentle taper. This too will pass.

HeronNS profile image
HeronNS

I agree with Sheffieldjane. You are at the level where the adrenal glands are having to pick up their pace again and sometimes they are rather slow to do so. Rest, and patience....

Nsj1985 profile image
Nsj1985

I think it's the tapering. I'm at 5mg on a similar path to you and feel just the same - tearful for no reason, tired, and a bit odd - I'm hoping it's all part of the same path to remission. My strategy so far is to be very conscious of pacing myself so that I don't get overwhelmed by little things. Hope it improves for you soon.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi Susie,

Would say adrenal glands. After 2 years of being "asleep", they now have to awake and start working again, and some people find that a difficult time. It's a bit like a car being in the garage for a long and then you trying to start it - it takes a bit of coaxing!

Personally I was very fatigued on taper from 6mg down to 3mg despite going slowly.

Would suggest you stay at 6mg for a bit longer than your usual taper maybe, and then (if you don't already) do a slow taper over a few week - many are available - see Pinned Post - Steroid Taper Web Application - and 0.5mg a time.

It's really just a matter of going slowly and being patient until they decide to get going again.

markbenjamin57 profile image
markbenjamin57

Hello Susie

I'm on a similar trajectory, and can well relate.

I agree with the others here - when you taper the Preds to around or below 7.5 mgpd, the sleepy adrenal glands are being encouraged to start producing natural cortisol again after a long lay-off and can protest quite loudly if they're struggling. The symptoms you describe are quite common - mental and physical fatigue especially.

Unfortunately there doesn't seem to be any magic solution to this: just pace yourself, take things easy and only reduce further if and when your complex physiological / hormonal system balances itself out and you feel a little more 'normal'. As many of us know, the 'last' bit of the tapering process (i.e. from 7.5 to zero) feels like we're nearly out of the woods after a long period on the Preds - but is notoriously difficult and slow for this reason.

Some people can take longer to get from, say, 5 mgpd to zero than from 20 to 5 (sorry!) - and, as our friends here say, patience and very gentle reductions are key to managing what is hopefully the final leg of the Pred Journey..

Hope this helps - try to stay positive in the meantime ;-)

MB :-)

jinasc profile image
jinasc

I would say, as I have said before, once you get down to 7.5mg and below, a synacthen test will tell you the state of your adrenal glands.

Best time I ever had in a hospital...........warm room, very comfortable chair, telly on the wall, I took a book (read one page) , fell asleep after they started the blood test, they woke me up with a cup of tea two hours later and I went home. Brilliant.

Result two weeks later, everything doing fine.

PMRpro profile image
PMRproAmbassador

You are at the dose where normal adrenal function has to return - and however you slowly you went down it may not be quite as slow as your body would like. So I'd suggest hanging about at 6mg for a few months - or at least until it improves which, if you are lucky may just be a shorter time.

The synacthen test would tell if you if your adrenal glands are CAPABLE of staging a graded return to work - but only practical experience will show whether they are doing so. Just like there are a lot of other factors in your car starting besides the charge in the battery!

Sandy1947 profile image
Sandy1947

What is tickety-boo? We don't say that in NY! Tired is part of auto immune disorder and for mood swings, thank Pred! Try changing the air with comedy on Netflix or clubs, gratitude journal or being around children. Wear bright colors...no black, white or grey! Do a dance, walk in nature, pet a puppy or dog. Probably a cat but I have cat phobia.

Please let me know what works! Feel better.

PMRpro profile image
PMRproAmbassador in reply to Sandy1947

Possibly not - but google was happy to define it as fine, all in order...

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