Is this adrenal glands?

[Poshdog]

Hello people, have been on pred nearly 6 years, the last two on 4mgs. Dropping by 0.5 DSNS ,3.5 OK , now slight ache in shoulders BUT feeling like a runaway steam train - every nerve and sinew poised for flight, heart thumping and feeling trembly, concentration all over the place, can't sleep yet so tired. Do I persevere or do I go back up? Looked at FAQs but couldn't find a perfect match. So, of course, I come back to you all to see if this is to be expected. Thought I would feel tired but this is more or less the opposite. Is this stuttering adrenals? xx

[PMRpro Ambassador]

Do you drop in one go or do you use one of the slowed tapers so you introduce the new dose gradually?

[Poshdog in reply to PMRpro]

Very slow. 1 day new dose 6 days old dose, but am holding back now on 3.5 to see if it helps

[DorsetLady PMRGCAuk volunteer in reply to Poshdog]

Well I would suggest staying at that level for now, and give the adrenals a chance to get (or attempt to) their act together…..very often takes a lot longer than you anticipate as many of us know….

[DorsetLady PMRGCAuk volunteer]

Certainly sounds like adrenals….apart from shoulders which could be too low a dose, unless you have done anything to make them troublesome. .

Did you read this re adrenals -

healthunlocked.com/pmrgcauk...

[Poshdog in reply to DorsetLady]

Thank you, have just finished reading it. Still can't figure out what is going on. Seem to have no concentration at all, mind jumping all over the place with accompanying anxiety, just waiting for the worst to happen except I don't know what it would be!

[DorsetLady PMRGCAuk volunteer in reply to Poshdog]

Well I would plump for adrenals not functioning correctly…certainly anxiety, fatigue and loss of concentration are prime examples of that…..

[Poshdog in reply to DorsetLady]

Aha, that is a comfort. Will try to relax now and not keep you up any longer! x

[DorsetLady PMRGCAuk volunteer in reply to Poshdog]

No probs…..

[HeronNS in reply to Poshdog]

I think a number of us have these sorts of odd experiences. In my case at 7 mg I had some strange feelings of panic, which went away unnoticed in a couple of weeks. At 4 mg I was hit by "deathly fatigue" which, again, went away after a while. All it took was time. At both doses PMR symptoms themselves continued to be well controlled. Be especially kind to yourself right now, get some mild outdoor exercise (daily walk?) and don't fret about things which can wait (housework?).

[Poshdog in reply to HeronNS]

Thanks HeronNS, will try to be kind to myself - think a bit of me time maybe necessary. X

[Omanain in reply to Poshdog]

Have you had your thyroid checked?

[Poshdog in reply to Omanain]

Not yet, thanks for suggestion

[SnazzyD]

Poor adrenal function certainly made me feel anxious and with a short fuse while at the same time making me feel like I could sleep for a year. Keep an eye on it while you pause on the reductions as it might be a different reason, but see if you can settle. I had to slow down much mor at these levels.

[Poshdog in reply to SnazzyD]

Slowing down is good suggestion - am probably not helping myself by trying to carry on as normal x

[SnazzyD in reply to Poshdog]

well that would do it! You so have to listen to your body. If it feels washed out, stop. My life was pretty flat for the best part of a year, because to me it was more important to get my adrenal function back than pushing the dose back up which might undo mu good work, just to feel like my life was normal for five minutes.

[Poshdog in reply to SnazzyD]

You are so right! Five minutes is quite a long time!

[SheffieldJane]

Well that makes me feel less weird. I am finally down to 5 mgs and last night I went to bed at 9.30 pm and eventually got to sleep at 7 am. I did feel “wired” and uncomfortable but not as dramatically as poor you. I am so glad we are sharing this, most doctors just don’t know about this stage of our diseases.

[herdysheep in reply to SheffieldJane]

Without this forum, I wouldn't have known about it either. We may expect 'wired' at higher doses of pred but after long years getting down to a lower dose/pmr reducing, it was a shock to realise there's another set of even more indeterminate issues waiting to assail us. When we are feeling vulnerable, even the smallest setback seems disproportionate and harder to distinguish what is what and how to deal with it. Of course, we are getting older and the queue may be longer! As ever, thank god for this forum.

[SnazzyD in reply to herdysheep]

This point came as a total disappointment, especially when the doctor said I would “feel human” after 10mg!

[Dochaz in reply to SheffieldJane]

I'm still at 8 mg, so it's not due to the adrenal issue, but I have the same kind of nights on a regular basis, ie. falling asleep on my feet at 9 pm, but when my head hits the pillow my mind starts whirling and sleep comes with the dawn chorus. Exhausting!

[Viv54 in reply to Dochaz]

Thats me !! out for the count and then when bed time comes awake most of the night, btw im also on 8mgs , tried 7.5 could not sustain it !

[SnazzyD in reply to Viv54]

The only way I found that helped was getting lower to get out of this hideous in between phase where there wasn’t enough Pred to keep me going but too much for the adrenal axis to fully wake up. I had a deep hunch that this was the case. The issue is working out what is true for your own situation. I do worry when people have repeated visits to this dose level and keep going back up because its hard. It’s so difficult though.

[Viv54 in reply to Viv54]

Yes it's so difficult, I'm have a course of Vitamin B injections starting next week, was thinking about dropping 0.5 to see if it will balance out in some way, if that makes sense!🙄

[PMRpro Ambassador in reply to Dochaz]

I wouldn't be too sure of that - some people start to feel the adrenal effect - or lack of it - at 10mg. Everyone is different and I don't care what the medical experts say, the way patients experience it varies.

[Poshdog in reply to SheffieldJane]

As you say it is so good to be able share this. Thanks for your reply. Just woken after very broken night and still feel 'wired'. Will try to talk to gp although got text message from surgery saying emergency cases only as overwhelmed. Sure this is not helping.

[PMRpro Ambassador in reply to Poshdog]

It's a difficult call - because if it is ignored, it will become an emergency.

[Poshdog in reply to PMRpro]

Have gone up to 7.5mgs in the hope I will notice a difference. Thinking to try this level for 4 days then drop back to 3.5 or maybe the 4 I was taking for 2 years. Need a bit of respite as not thinking clearly at the moment

[PMRpro Ambassador in reply to Poshdog]

Same difficult call isn't it - you have to be able to function to survive!

[Poshdog in reply to PMRpro]

Too right!