Tapering and adrenals

[waltztherapy]

Tapering and adrenals.I am currently at 7.5 mg prednisolone. I've been slowly tapering by half an mg every four weeks for nearly a year. This has worked well. This tapering follows a pattern: first 2/3 weeks super, nearly pain-free then niggles and after niggles subside, reduction, then ok again. I keep active and tailor activities to suit level of pain.

New symptoms appearing now, slight nausea before a meal and more sleepiness.

I have been reading on this forum about own adrenals kicking in and wondering if I should extend the tapering intervals to 5 or 6 weeks, ..to give the adrenals a chance? just a guess, no knowledge, and waiting to see my rheumatologist. Thank you in advance for any advice.

[PMRpro Ambassador]

The slight nausea and sleepiness does sound as if you are getting to the dose that isn't quite enough and you adrenals are lagging behind, You could try a longer interval to see if it helps - but this is a stage you have to wade through to get to the other side.

[waltztherapy in reply to PMRpro]

Thankyou PMRpro. Really grateful. Kind regards.

[Suedeshayes in reply to PMRpro]

Do you think that at 2.5mg, the adrenals will be more or less working on their own, or, do they still struggle at that level of dosage? Just trying to work out when tired symptoms will eventually lessen. Thanks S.

[DorsetLady PMRGCAuk volunteer in reply to Suedeshayes]

It's not quite as simple as that.... everyone is slightly different.... and it's well documented that even after coming off pred it can take anything between 6 months to a year to be fully functioning..

You just have to keep reducing very slowly and have patience.

[PMRpro Ambassador in reply to Suedeshayes]

No way of knowing, everyone is different and even 2mg can be enough to suppress adrenal function. And as DL says, even after stopping pred altogether, you aren't back to normal, there can still be fatigue and rotten days for some time.

[Suedeshayes in reply to PMRpro]

Thanks. What a long road and patience is sorely tried at times. Kind regards.

[SnazzyD]

I found under 8mg a tricky time as the dose was a bit too high still for the adrenal glands to fully wake up and a hit too low for all my daily cortisol needs to be met. Fatigue for no good reason, nausea, nothing in the tank, low mood and vague fluey aches was how it got me. As I reduced I came out of this no-man’s- land and better times became more numerous. I did have to lessen the demands on the body physically and emotionally if at all possible to reduce the cortisol needing stress on my body. A trip out to a local shop was about my lot when it was at its worst. You need to see how you go with your journey but I found making the interval longer but jerking at it was my answer. The lower I got the slower I went with my longest being 14weeks. Some drops were easier than others for no apparent reason.

I found that my Rheumies were fairly ignorant of all things adrenal. It was my GP who referred me to an Endocrinologist whom I saw at 4mg. They just said to keep going even though some days I felt dreadful.

[Kendrew in reply to SnazzyD]

Hi Snazzy,

Found this reassuring as in the midst of some conflict of opinions between myself and rheumatologist, the suggestion of "keeping going even though sometimes you feel dreadful" resonated with myself....I'm pretty sure adrenals are a contributory factor in my current health status and my approach to dealing with it has been to follow all the guidance and advice offered here under such circumstances. Unfortunately my rheumatologist said my adrenals were "fine" because my BCT had been "fine". She totally disagreed with the idea that the adrenals may be working but are probably still struggling to produce the extra amount required when there's any extra demand put upon them!

I stood my ground though and when she said she wanted me off steroids within the next 3mths I told her that categorically that was not going to happen!

[SnazzyD in reply to Kendrew]

Well there’s more to the adrenal cortex then just the glands being kicked chemically and working. During the test the job of the pituitary gland is being done by the injection.

My problem was a sustained extra need for cortisol.

[SheffieldJane in reply to SnazzyD]

This is a perfect description of how I am. Also very bad nights for no discernible reason than deep sleep nights for 12 hours. It is almost impossible to explain to loved ones who have seen you do well and expected it to be linear. Taken for lunch in the sunny countryside and had to beg to be taken home mid lunch as a grey blanket of exhaustion dropped on my head. I get cross and this dissolves any sympathy that might be available. We need to devise a medal for those who care.🏅

[Kendrew in reply to SheffieldJane]

You're so right.

As soon as you say you're having a good day, everyone expects you'll continue improving and don't understand that you literally mean you're having a good day!.... and that tomorrow could be very different day!

[Longtimer in reply to Kendrew]

A whole day would be wonderful, things change for me every couple of hours! Think things have eased, then all floods over me….horrible!

[Kendrew in reply to Longtimer]

In actual fact, I have had some days where I've got up, felt pretty good, but by afternoon I've felt rubbish....and vice versa! So it's reassuring to hear you experience pertaining to that too. Xxx

[Longtimer in reply to Kendrew]

Certainly do, things change for me every couple of hours sometimes, wouldn’t mind if I had earned it! Can just change sitting in a chair! Such a mysterious battle!

[Kendrew in reply to Longtimer]

If only the medical professionals would read our forum posts..... Heck would they learn a lot!!!

[PMRpro Ambassador in reply to Kendrew]

Don't be silly - what could patients POSSIBLY know about a disease ...

[Bobbury in reply to PMRpro]

Yep, totally agree!

[Longtimer in reply to Kendrew]

The best ones would, the arrogant ones would dismiss them.

[darkred in reply to Kendrew]

Yes, yes and YES.

[SnazzyD in reply to SheffieldJane]

Yup

[waltztherapy in reply to SnazzyD]

Thankyou Snazzy D! It's so reassuring to hear your similar experiences and how you dealt with them. Another big learning, experimental curve. ... My regular exercise regime, (ballroom dancing, table tennis and walking) is much curtailed, at those rotten times, but socially forms a useful distraction, in between sleeping spells.

Thanks again Snazzy D, and to all contributers for your very informative, helpful posts.

Kind wishes, Waltztherapy.

[SnazzyD in reply to waltztherapy]

I felt like a shadow of myself for months and thought I would never come back. That is supposed to be a positive to say there is light at the end of the tunnel for the majority eventually. It can be a blow when the low doses are ‘sold’ as the home straight that you run down to a cheering crowd. Some people though don’t get this issue at all. It’s a funny business.

[Temoral in reply to SnazzyD]

This is such a good analogy! The brain fog adds to the mix too...when you are in that home straight and you misunderstand a conversation and are told to 'keep up' by those who don't understand. Oh the joy of ageing with 'invisible' conditions...

[piglette]

Probably at 7.5mg the real deathly fatigue from the adrenals will not have really hit you yet, of course it may never hit you! If it does, it is a good idea not to reduce and just take it easy until things improve before you carry on reducing.

[waltztherapy in reply to piglette]

Aw thanks piglette, appreciate your kind warning. One lives in hope.

[DorsetLady PMRGCAuk volunteer in reply to waltztherapy]

Have you read the info in the FAQs about adrenals-

healthunlocked.com/pmrgcauk...

[waltztherapy in reply to DorsetLady]

Thanks for flagging up the link to the adrenals issues Dorset Lady. I have saved it where I can find it, but always grateful for any reminders. (brain fog).Kind regards, Waltztherapy

[DorsetLady PMRGCAuk volunteer in reply to waltztherapy]

You’re welcome

[Bridge31]

I would do Dorset Lady’s 7 week taper from now on. Slow, slow, slow. Much better than a flare and having to go back up.

[Hoopy1950]

Oh what a wonderful wonderful forum this is. I am presently tapering and have got to 8mg very slowly but have been concerned about slight nausea and such tiredness. Having read all these comments I now feel quite relieved - thank you. And, yes, it would be good if the medical profession took time now and again to read from this forum - nobody knows it better than you guys.

[waltztherapy]

It's so good to hear all experiences while navigating the tricky :homeward straights" or windings! Serpentine path?Thanks to all who contribute, as always.

So lucky to have this helpful caring forum.

Good luck to all at every stage.

[PMRpro Ambassador]

Probably better to start a new thread - few will see it here in the middle of an established thread, most don't read the replies, only the author of the post, DorsetLady and me ...

[Tuppence55 in reply to PMRpro]

Ok

[Tuppence55 in reply to PMRpro]

ok, I’ve removed post

[PMRpro Ambassador in reply to Tuppence55]

You didn't need to. DL and I will always see things in the middle of a thread, almost noone else will so if you want a variety of opinions - start a new thread.

[DorsetLady PMRGCAuk volunteer]

As PMRpro say’s probably best to start new thread, but would say adrenals struggling -so stay at 3mg as long as you need. It really is a low dose for your illness -and will also help adrenals - once the morning fatigue eases a bit more then think about reducing -but not before.

[Tuppence55 in reply to DorsetLady]

Okn

[Tuppence55 in reply to DorsetLady]

thanks, I’ve removed my post

[DorsetLady PMRGCAuk volunteer in reply to Tuppence55]

You didn’t need to removed it…..just copy to a new post so everyone would see it… but I have replied so hopefully that helped.

[bonio]

thank you so much for asking this question. It and all the replies have been so so helpful to me. I'm at 7mg for the second time, got to 6mg but pony died and life went haywire so Hospital put me back up to 7.5mg and told me to take my time. I am. I've felt so pressured to cut cut cut but that just isn't possible, slow slow slow for me. Terrific forum, thanks everyone for your v helpful replies. x

[Sibelius5]

As a new kid on the block, I just wanted to say how supportive, helpful and informative I’m finding the website and blogs, and this message thread is all those - having information from people with long-term experience and knowledge , even if it’s difficult to hear, undoubtedly helps in dealing with what’s happened and likely to happen, while hearing other people’s stories helps break down the isolation. So thank you for this.

[DorsetLady PMRGCAuk volunteer in reply to Sibelius5]

Why we are here…

[PMRpro Ambassador in reply to Sibelius5]

Ditto to what DL said!!

[G-Jo]

Thank you, it’s so helpful. I had reduced to 2mg but after moving and starting landscaping (at my own pace), had to go up to 4. Then the prescription ran out early, and it took me a week to convince the doctor it should be renewed at 4. His assistant even said I was “abusing Prednisone “. I actually yelled at her on the phone! He wanted me to reduce from 4 to 2 in 2 days. I’m going to find a different doctor.

[PMRpro Ambassador in reply to G-Jo]

"Abusing prednisone"? What an ignorant and pompous comment. Hope they develop PMR one day ... And get an equally idiotic doctor.

[Karendeena]

I had nausea and GI issues and anxiousness and jittery feeling when I tapered too quickly