Adrenal involvement in tapering

[Groggrim]

Hello 👋 I have a question 🤔 I have been reading the information on the role of the adrenal glands and how tapering prednisolone involves them. I've also read a few older posts about this. I am currently comfortable on 7mg and in no hurry to taper lower for now, and the information says around this level the adrenals need to start to wake up 🥱 Once I start to taper again I realise that very slowly is the way forward. What I haven't quite understood yet is the signs of low adrenal function to look out for. I read about shivering and feeling cold which I have been for some time 🥶. I thought it was my thyroid levels but I had my six monthly check with my endo recently and my TFT was spot on so it's not that. What do I need to be aware of when I move into the realm of under 7mg please, apart from going slowly?

Thanks for listening. GG.

[SnazzyD]

Low thyroid has similarities. The main symptom is just feeling totally exhausted for no good reason or you do something pretty minor and you feel like you need a sleep or a good sit down. I stopped being able to spring out of bed which I had done since birth. Sometimes it’s fits and starts. So you feel mostly ok but then you overdo it just a bit or you trip over something or you sit in traffic anxious about being late for something, suddenly you feel shakey and weak and need to lie down. If you’re lucky you just feel a bit tired. If nausea or diarrhoea kick in and it isn’t a bug, you know you really do have to rest no matter what you’ve got planned. Never go out without Pred in your pocket and wear a medic alert. For some this realm, as you put it, starts before 7mg.

[Groggrim in reply to SnazzyD]

Thank you for answering my question Snazzy. Your explanation is easy to understand and I will be aware. I have worn a medic alert for a few weeks now and thanks for the advice to carry pred; when might it be needed? I haven't noticed any of those symptoms yet apart from the feeling cold all the time, but I do know to go slowly once I start. I have just finished copying out DL's 5 week slow taper plan at 0.25mg every 5 weeks. Do you think a drop of 1mg every 5 months would be ok or is that just too slow?

[SnazzyD in reply to Groggrim]

As DorsetLady says, don’t stress too much. If a reduction is too fast for the adrenals you soon know an it is an easy fix, not like trying to work out a flare. It isn’t an exact science and even though I had a rough time doesn’t mean you will, plus I got there in the end.

[DorsetLady PMRGCAuk volunteer]

Page 5 of this leaflet explains adrenal insufficiency as apposed to an adrenal crisis

kch.nhs.uk/wp-content/uploa...

There is more info in FAQs if you haven’t read them -lots of related posts. You will see not everyone as the same symptoms nor at same dose of Pred.

SnazzyD who did have a lot of issues has given good advice -but I would just say, don’t get start getting stressed about it .. that’s something you don’t need.

[Groggrim in reply to DorsetLady]

'but I would just say, don’t get start getting stressed about it .. that’s something you don’t need.'

I won't, I promise. You know me too well 😘 I don't plan to start any taper until my husband is back from Canterbury.

[DorsetLady PMRGCAuk volunteer in reply to Groggrim]

I do!😊

[Angelsmummy]

” Less hurry,less worry” ( hope you didn’t read that in a book somewhere!) I know it is hard G but don’t try and think too hard about what ifs!Of course we have to be aware of what MIGHT happen,but as long as you go really slowly with the Pred reduction, and are aware of adrenal crisis symptoms ,you will be fine.Listen to your body,not your mind,go as slow as you can .The mind can take over with this disease if you let it.Focus on the NOW but be prepared for the future.Have a good day ,xx💐😜

[Groggrim in reply to Angelsmummy]

Thank you so much Angelsmummy, you are wise and correct. Due to a difficult upbringing I do live by 'what ifs', I know that. I try to preempt things to stop things happening that I can't control. I am learning a lot about myself through this journey.

[Angelsmummy in reply to Groggrim]

Sounds like my awful childhood and abusive first marriage,.I tend,or did tend to “ push people away “ if I felt under any threat or hurt.Getting better now as I have so much more to focus on.but in general,I tend to live my life the way I want to now,not be guided by others and their poor choices.My family circle has diminished somewhat but the ones that matter the most are still in my life and give me and OH no hassle.Until I came on this forum my body was a mess as was my mind,nobody to turn to but I know that with the help of the likes of the Wise Ones plus the support and compassion from others in the same boat,I never feel alone,and look on this forum as an extension of family.Just go with the flow G,we have all beeen at this worrying stage and no doubt it will rear its head again but as has been said SO many times on here Mr Pred loves stress ,don’t let him win.!xxPS How is the SLOP taper going?😂😳💐😜

[Groggrim in reply to Angelsmummy]

Good morning AM, stress has been a constant companion for more years than I care to remember due to the overwhelming need for affirmation and approval that was missing while I was growing up. Anyway, enough about that. I have acquired a book by Dr Chatterjee that I think could be helpful.

The SLOP taper is on hold for now 😉 I'm ok at 7mg, not so good at 6.75 so I don't need more stress. 7mg will do me for the time being. I will restart the slop taper when I feel the time is right. Have a good day, GG x

[Angelsmummy in reply to Groggrim]

Good for you G,,your words about the need for affirmation etc,resonate with me.If only these so called “ parents” realise just what happens to their offspring in the future with all the baggage heaped on us.Mine was a nasty ,vicious stepfather who made it his aim in life to single me out for his treatment from the age of 7.But never mind,what is done is done,life has to move on ,we have too much else going on to dwell on the past.And please tell Dr Chatterjee to stop nicking my words or I will have him for plagiarism!!xxxTake it easy,xxx💐😜👍

[PMRnewbie2017]

Please don't get too hung up on numbers. Some people are more sensitive than others and will react to small changes in dose, others may be less sensitive. The bio-equivalence of Prednisolone to natural cortisol output is not an exact science or number. I have seen figures ranging from 7mg down to 3mg depending on which paper you read.(Pred is more potent) What is important is how you feel, how active your PMR is and how suppressed your adrenal cortex is. For example I had a basal cortisol test done over two years ago when I was taking 1.5mg Pred. The result came back ridiculously high at over 600, but I was still feeling tired in the afternoons. I flared a few months after that so the result was academic. Whenever you reduce your pred dose you will feel it. That's normal but it shouldn't last. Unfortunately it's something we all have to work through and some days will be easier than others because for around 12 months even after reaching zero, daily cortisol output will fluctuate. As AM says, control your thoughts and reframe your thinking, as the mind is a very powerful ally when put to good use. x