Adrenals or Not Adrenals

[Kendrew]

Well, further to my post last week, I've had the results of both my faecal occult blood test (for new re-occurring digestive issues) and BNP blood test (for indications of heart failure) and all have come back normal with no further action required.

The extreme fatigue has improved significantly and digestive issues are almost completely gone now, but my long history of ectopic beats now has another 'episode' to add to the list as they've re-emerged, but again, quite moderate in frequency and intensity. I'm also still experiencing this very subtle balance issue that so far hasn't got any worse but hasn't gone away either.

I'm both thankful and relieved, at the test results and feel slightly more confident in assuming that my extreme fatigue and new symptoms are probably adrenal related. They only started emerging when I had slow tapered down from 5mg pred to 4½mgs.

However, I intend to contact my rheumatology team and have another discussion about this just to make sure there's nothing else going on that needs to be addressed.

I know from the people who were kind enough to reply initially, that my symptoms have also been experienced by many of you whilst navigating your way through the 'adrenal awakening' phase, but any other thoughts or comments would be greatly received.

[PMRpro Ambassador]

Dizziness that starts very insidiously can be seen in adrenal insufficiency - would that fit with how you feel? In which case - since the fatigue is improving, maybe it IS all adrenal insufficiency and you may get away with just slowing down the taper even further. The bigger the step the more there is to adjust to.

[Kendrew in reply to PMRpro]

It's quite weird as I wouldn't say I feel dizzy. It's more a sensation of just having to 'check' my balance if I turn quickly, or step back quickly for instance. No one else would probably notice but I can feel it very subtly.

[Koalajane in reply to Kendrew]

I quite often have the same problem especially if I move too fast.

Glad your blood results were normal

[Kendrew in reply to Koalajane]

Thankyou.

[Pr0jection in reply to Koalajane]

Me too, so I'm glad I read this post

[piglette in reply to Kendrew]

I have that problem too. I mentioned it to my orthopaedic surgeon at my check after my hip replacement and he just laughed!

[Kendrew in reply to piglette]

👍👍❤️

[Longtimer in reply to Kendrew]

know exactly what you mean.......feel the same very often....especially when tired...(mostly always!)....

It's not easy to make decisions wether to lower pred or not.....feeling as I am on 5mg, keep thinking, should I stay at 5 mg and hope things ease, or should I lower to 4.5mg very slowly and hope the adrenals kick in!.......so difficult when nothing changes....

Good your test were ok.......

[Kendrew in reply to Longtimer]

Thankyou.

Things do seem to be settling down a bit but I'll probably wait until I feel things are a bit more stable before beginning next taper.

[Longtimer in reply to Kendrew]

Thats good....not easy...

[Oboes22 in reply to Longtimer]

Hi Longtimer, I am where you are, doing DSNS and have just reduced to 5mg and will stay there for the next 6 weeks but know I will be apprehensive about introducing 4.5mg. I too feel, not exact dizzy but just a bit ‘odd’ at times. It’s just one day at a time. Stay safe.

[Longtimer in reply to Oboes22]

A minefield to know what and when to drop next....keep safe yourself....

[PMRpro Ambassador in reply to Kendrew]

Insidious ...

[Exflex in reply to Kendrew]

I had this dizzy episode when part way though the DL slow taper from 2.5 to 2mg. I stopped and stayed at 2.5 and have been there for last 2 months, take a bit.

I will try again when the house move stress recedes. It’s not that I don’t want to reduce…

[Sharitone in reply to Exflex]

If it seems daunting, you could always do a slow taper to 2.25mg! that's what I have done since a dizzy episode trying to drop from 4 to 3.5. In fact, I reduce by 1/8 mg at a time.

[Sufferinginsilence in reply to Kendrew]

Gosh, I experience that quite a bit but I was putting it down to a touch of vertigo (which I have suffered from in the past) - I'm only at 8mg so perhaps it is vertigo and nothing to do with the adrenals?

[Kendrew in reply to Sufferinginsilence]

Possibly.

As Pro said...vertigo is the name attributed to a set of symptoms but we still need to the cause.

[Shaza123 in reply to Sufferinginsilence]

I’ve had this strange dizziness especially in the evenings I thought it was just me

[SheffieldJane in reply to Kendrew]

I share that symptom, post Covid and on 6 mgs of Pred. Sometimes it feels a little more dramatic but it is becoming less often. I worried that I was going to be stuck with vertigo.

[Longtimer in reply to PMRpro]

I am replying on my old tablet....has HU finally done something about the problems with multiple letters!....or am I being silly....it has been known....

[DorsetLady PMRGCAuk volunteer in reply to Longtimer]

Whaay -sh…🤣😂

[Kendrew in reply to Longtimer]

sorry for jumping in on your question to Pro.... if you're asking about what I think you're asking about....the problem seems to have returned. I'm having to rewrite words that change constantly. The cursor jumps around so I'm suddenly writing in the middle of previous paragraph for some reason and multiple letters appearing!!... to mention just a few strange anomalies!

[DorsetLady PMRGCAuk volunteer in reply to Kendrew]

that seems to have been sorted for PMRpro and me amongst others, but as you can see first letter isn’t automatically a capital!!

[Kendrew in reply to DorsetLady]

Same for me too if I don't opt for capital letter.

[DorsetLady PMRGCAuk volunteer in reply to Kendrew]

It really is getting beyond a joke recently……

[Kendrew in reply to DorsetLady]

It takes so long to compose a message because you're spending so much time deleting and correcting!

[DorsetLady PMRGCAuk volunteer in reply to Kendrew]

Might be with drafting in word or notes depending what device using and then just copy & paste….

Shouldn’t have to, but might reduce the stress!

[Charlie1boy in reply to Kendrew]

and me.

[Bcol in reply to DorsetLady]

All good for me at the moment, even getting capitals at the moment, but wasn't earlier and won't be surprised if I don't later.

[DorsetLady PMRGCAuk volunteer in reply to Bcol]

Well stops you getting bored…🤔

[Bcol in reply to DorsetLady]

Indeed, however it has just reverted, should have kept quiet!!!!!

[DorsetLady PMRGCAuk volunteer in reply to Bcol]

oh rats! ….or similar

[Bcol in reply to DorsetLady]

Definitely or similar!!!!

[Kendrew in reply to Bcol]

Hahahahahahahahaha!!!!

[Floridafan in reply to DorsetLady]

ah… I thought that was just me! I’ve been telling my husband I need a new iPad! 🤣

[DorsetLady PMRGCAuk volunteer in reply to Floridafan]

perhaps keep that to yourself ...😊

[MrsNails in reply to DorsetLady]

I’ve discovered that!…..

[Longtimer in reply to Kendrew]

Thought it too good to be true....I'm typing very slowly!

I been given by granddaughter her old iphone....never had one before...oh dear.....my brain just dosen't get it!....will keep trying though!

[PMRpro Ambassador in reply to Longtimer]

You're OK - it is a year since I was given an old iPhone, just cannot get my head around it!

[Longtimer in reply to PMRpro]

Why are they so complicated!....will have to have some very slow lessons with g/daughter, and write down!

[Bella59 in reply to Longtimer]

HOORAY I can type on my tablet now.

[Longtimer in reply to Bella59]

We are easily pleased!..😂

[Bowred in reply to PMRpro]

hi just need to ask I have been on medication for 1 week now for sleeping TB it RIfampicin 300mg two capsules day and isoniazid three capsules day can these medication have affect on steroids makes steroids weaker it just muscles in in part of my body pain or is it we’re I have tapered down from 15mg to 7mg since March

[PMRpro Ambassador in reply to Bowred]

Sorry - I have absolutely no idea I'm afraid. Is that because you have been put on tocilizumab?

[Bcol]

Brilliant news regarding the BNP test and faecal blood test. a couple of things less to worry and think about. I like pro's thoughts about the everything all being tied into the Adrenals.

[Kendrew in reply to Bcol]

Thankyou. Yes...I'm really relieved about the results. I have a gut feeling it's adrenal related.

GP said I'm tapering "so incredibly slowly at ½mg at a time" that I couldn't possibly be experiencing adrenal insufficiency! Grrr!



[Bowred in reply to Kendrew]

hi just need to ask what does it mean adrenal

[Kendrew in reply to Bowred]

HI there,

Anything 'adrenal' is referring to your two Adrenal glands situated just above your kidneys. They secrete adrenaline, noradrenaline and corticosteroids.

If you look in FAQ'S under A for Adrenals you'll find lots more information that'll explain the significance of prednisolone on the adrenals.

[Bowred in reply to Kendrew]

thank you I will have read up on it now 💜

[DorsetLady PMRGCAuk volunteer]

I refer you to my previous answer M’Lud!

[Kendrew]

haha!😂

[DorsetLady PMRGCAuk volunteer]

Perhaps that the ploy……🤔

[humlies]

So relieved to hear that it is not just me that has balance problems - nor is it only me that has challenges with the computer cursor hopping around. Centuries ago I learnt to touch type - but that has more or less gone out of the window. Can I blame this on PMR or is it just old age...who knows.

[PMRpro Ambassador in reply to humlies]

Has it improved? They have done something the last day or so - my cursor problems have gone

[humlies in reply to PMRpro]

yes, mine too; how clever THEY are!

[PMRpro Ambassador in reply to humlies]

A very kind person managed to get a picture and send it to them - might have taken forever otherwise!

[Tiggy70]

Kendrew, so pleased your results came back normal. Less stuff to worry about but if you’re anything like me I worry if I’m not worrying about something 😖

[Kendrew in reply to Tiggy70]

Thankyou.

Haha! So true!

[prairiesong]

Happy for you with the good reports. I also feel bouts of serious fatigue when I drop from 5mg pred to 4.5. Just did a month of alternating days of the two and today will start 4.5 every day for a month. So far I am not having that terrible fatigue so fingers crossed. I do agree it must be the adrenals being "stubborn". We let them be dormant for so long!!

[Telian]

I’m going through adrenal resurgence for the second time. Previously got to 3mg before having a flare. Now on 7mg but definitely know I’ve just gone through it again (albeit on a higher pred dose) my Rheumie doesn’t dismiss it either saying she hearing it more and more from second timers. She looks after me well. My symptoms were far more vicious this time lasting the same 8 months but 24/7 instead of an hour every day. I’m now left with less fatigue but can still drop off to sleep anywhere anytime. I particularly have the ‘swoon’ if I move quickly. It will settle down but for now that’s how it is. Good news re your test results- one less worry.

[Kendrew in reply to Telian]

It's definitely a challenging period to navigate your way through and not a very pleasant one either.

You've clearly had a difficult time with your adrenals but hope things are improving for you now.

[Telian in reply to Kendrew]

it is and not anything you can really explain particularly to none sufferers - I sometimes wonder if it’s thought we’re exaggerating! I hope to get through it but am stuck on 7mg with the threat of MTX - but because of other issues I have they’re holding it up! Not sure if that’s good or bad. In the meantime I’ll try another slow taper when the time is right. My Rheumie, thankfully, is very understanding.

[Kendrew in reply to Telian]

Yes....I think because symptoms of adrenals struggling can be so erratic, people often seem to look in disbelief when you explain that you can't do something one day, when previous day you maybe seemed very 'able'!

I often feel some of my friends think I'm making it all up. I wish!

Good luck with your next taper.

[PMRpro Ambassador in reply to Kendrew]

I suppose the point may well be that you can't do it today - BECAUSE you did it yesterday ...

[Kendrew in reply to PMRpro]

I love your incitefulness Pro. Sometimes the most obvious incites are not necessarily the clearest to see until pointed out.

[Telian in reply to Kendrew]

Too true I’m afraid - because I’ve always been active I keep pottering which is probably more than some do anyway hence looking notmal…… they ought to see me first thing you’d think I’d never walk properly again! And good luck to you too.

[Pippah45]

i know I am behind you now tapering to 6 pred but my experience may help. I got stuck at 7 and the only way I got to 6 was by lowering with .25 intervals. I failed dismally going down to 6.5 so rejigged and went to 6.75 success. Its a bit of a pain cutting into quarters but anything that works?

[RT18 in reply to Pippah45]

that’s helpful, thanks. I manage my mum’s meds (dementia). We got 7,7,6.5, 7,7 but as soon as I dropped one of the 7’s she fainted. Maybe I should switch one of the 7’s to 6.75 as the next move??

[DorsetLady PMRGCAuk volunteer in reply to RT18]

See you asked a question about your mum dizziness a few months ago… is this the first time she has fainted? If so, it may have been just a coincidence that it happened on the day she took 6.5 rather than 7mg, and perhaps a smaller reduction as you suggest might help…but I think I would want a bit more investigation. Although I’m sure you have already considered other causes - blood pressure, dehydration, other meds etc….

[Pippah45 in reply to RT18]

I agree with DorsetLady about investigating the fainting perhaps. I tried reducing to 6 and then 6.5 several times but the aches and pains returned so I tried the .25 reduction and I am safely now down to 6 after about 8 weeks. I will stay here for quite a while - perhaps till after Christmas - will see how I go. Good luck and your Mum sounds lucky to have your in her corner

[RT18]

thanks. She’s fainted once before whilst having a UTI but that also coincided with a taper starting just before the infection.

She’s only had the dizzy spells since Feb when we got to around 10mg pred. They are v sporadic and having backtracked all occur within a few days of tapering. I sat on 7mg for 21/2 months and nothing!

Found one good GP who happy to let us go very slow and thinks she probably will need to stay on low dose pred for life but he is currently on sabbatical. Duty GP not interested as after faint she’s fine.

She hates the BP test but when it has been done it’s fine & not low. She’s on no other meds other than the pred.

[PMRpro Ambassador in reply to RT18]

She should probably have had an increased dose during a UTI - as in Sick Day Rules. I have to say, if she has dementia I don't see why there needs to be much of a drive to reduce. A good GP experienced in palliative care is such an advantage in these situations. It is all about keeping the patient well and happy.