I am on my way down from 8mg to 7mg. Now down to 3x7 per week. I took 7 Thurs and again this morning.
3 times this morning I have had that feeling you get when you're going into shock, a big sinking feeling. Making me feel scared even though I am in completely benign situations (one whilst I was sleeping, one whilst cleaning my teeth).
Mark suggests it's my adrenals sending out adrenaline and I am inclined to agree.
Having made sense of it, it feels less scary. It's bloody unpleasant though.
Have others felt this?
It's been a while since I posted a photo of Thea....you'll find she's growing fast
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IdasMum
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Thea is coming along beautifully, you really see the passage of time with children.
I think your description of that feeling before you go into shock, a big sinking feeling is a good description of some of the sensations you get around this stage. It’s a better description than the one I gave myself - like a wave of misery with anxiety in the mix. It is worrying at first.
Now at 4 mgs I can feel full of life at inconvenient times like 3 am - nothing knocks me out. I have my 3 rd Synacthen Test when I get to 3 mgs.
Only the first one at 5-6 mgs was sluggish/ abnormal.
I’d say that’s your adrenals needing to work to give you enough cortisol because Pred is not quite enough for you, but they are not. I had it until mine got working better and that feeling of fear as if something is very wrong is horrible. Your adrenaline production is a different process but it’s not to say you get an adrenaline rush because of your distress. Saying that, I didn’t get any of the symptoms of adrenaline such as raised heart rate.
This is something I posted the other day to someone re adrenals (you probably know most of it already) -
Once you have been on steroids for more than 3 weeks and at a dose higher than 7.5mg (which is roughly equivalent to normal cortisol production by your Adrenals- called the physiological level) they temporarily stop working because the artificial cortisol in your body (Pred) means they don’t have to.
That’s means in a stressful situation where they would normally go into overdrive to help your body they don’t - that extra boost has already been superseded by the constant level the Pred gives (hope that makes sense) So you don’t get that extra burst of energy to help you out of a dangerous (stressful) situation - the fight or flight phenomena
That’s why when we get to low levels (around 7.5mg) we need to reduce very slowly to nudge the adrenals into working again. If they are a bit slow in waking up, we can find ourselves below our pre Pred normal level, and that makes us fatigued, sometimes nauseous and having headaches,
For the majority of people they do start working again - although it’s not like switching a light on - one day they’re asleep next day they’re awake! It takes a little while to recover all function.
Can’t say I ever felt like you and Jane describe - but guess as the saying goes “we are all different”.
Thanks for that. I’m down at 7/7.5mg for the first time and twice had to go back up to 15 when I got to 8 mg. I’m experiencing many of things you talk about. Today I’m feeling nauseous, shaky, fatigued, and having waves of dread and negative thoughts. I had been given anti depressants to counteract the emotional downturn which I was experiencing. They worked well until now. I’m due at GP this week. Reading this helped me understand in some way this next part of the journey. Thanks so much for that. Wishing you well on your journey.
Hi Idasmum
I know that feeling only too well! I see you are coming down from 8mg to 7mg - maybe consider trying to come down in 0.5mg drops at it will be less strain on your body, as DL has explained you are now on the approximate physiological dose & it’s more than a 10% drop, which is never recommended to drop by more than.
You could consider going back to 8mg or trying 7.5mg but you may find you’ll gave to sit at around for 7.5mg for longer than usual.
Taking DL's switch light metaphor to the daftness of my mind 🤪. My initial drops below 8mg were like one of those old flourescent bulbs that flickers and stops and starts. You have to stand on a chair and hit the starter to make it stay on. I had to go back and take smaller steps for a while. At 6mg the bulb flickers less but occasionally I feel like I still need to hit the starter!
I took the advice of the experts on this site and started reducing by .5mg at the 8mg level. I am now down to 4.5mg. I have the usual fatigue and heavy legs etc. but no pain. I do think my adrenals are probably, very slowly, compensating for the lowering of the prednisone.
How often are you getting this scary sinking feeling? Maybe work a chat with your GP & a Synacthen Test as your Adrenal Glands may simply not be working?
Docs here don't seem to like giving Synacthen Tests (both my doc and rheumie refused for some reason)!! Perhaps they're too expensive? My doc did say a couple of months ago that I would probably be on low pred for life! So be it?
As you know - I used to 'black out' (well 2 or 3 times a year), that seems to have settled down a bit, thank goodness, but this sinking feeling is totally different. It never occurred to me that it might be adrenals. I'll talk to my doctor again.
Have you any idea how much an A-test would cost privately in Germany? I've tried to Google it but haven't come up with any answers.
A very good description of the way I felt when I was at 7 mg. I described it less accurately as a kind of panicky feeling, inexplicable because there was nothing to panic about, I think it lasted about three weeks or so,
I can’t say that what you describe is the same as me. I’m now on 5mg going down to 4mg but since I was around 8mg maybe less, and I don’t know whether it’s anything to do with adrenal kicking in or not, I suddenly get a surge of energy in my legs feet and a strange pulsing feeling through my body this last about 15-20 seconds. I can only describe it like I was standing on the edge of a high cliff (hate heights) and you get that tingle anxious feeling in your limbs. It usually happens when I’m inactive generally when I’m on the brink of waking up. I don’t like the feeling make you feel all hot too. This reduction is a nightmare.
You explain it very well Suffolklady - the ‘anxious tingle feeling going through your body’ and for me with a heavy dull ache (particularly in the legs and chest) that gives you such anxiety you have a ‘don’t know what to do’ feeling that’s hard to explain to anyone. Usually comes on when I’m waking up - just don’t know what to do at the time and thankfully it is short lived.
I’m on 4mg (5 years GCA/PMR) and it’s taken a year to taper from 5mg (.5mg each time). My Rheumie says I don’t need a synacthen test - just to continue tapering slowly!
Some days I wish I could get lower then others accept where I am....
.....think I might run it by him again. Although I’m not that keen if I’m honest - it’s taking a while but I’m no worse, just very slow progress. Rheumie has said I might have to stay on a low maintenance dose - if things get too bad I’ll pursue it..
It’s the same exactly as you say, why when waking I don’t know I can be laying calm sleeping a whoosh it come on but goes very quickly. Still very unnerving as it’s such an alien feeling not one I’ve ever had before. I’m assuming it’s an adrenaline surge but I don’t know. I get the anxiety thing too not when I’m stressed but at odd times again unexplainable. My legs are always heavy like lead but that’s probably something else. I can’t get lower and when I’m stable, 5mg in my case, I dread trying to reduce as not for the pain point of view so much but the dependency aspect not feeling well when I go down. So I think reduce by half mg will be the way to go
That feeling we describe is certainly alien - so stressful, thank goodness it doesn’t last too long. I’ve never been able to describe it - it’s like the body is possessed. - it takes my breath away it’s so painful - sounds ridiculous but it’s true.
After my last 1mg taper, which was disastrous, I only drop by .5mgs and 6 months later still ‘scared’ to try the next drop. Think it’s the way forward for you too from what you say.
Yes me too I can’t stay on pred forever and it is the apprehension aspect that stops me reducing I feel so unwell when I do and it certain last longer than I would expect in fact I don’t get over the drop. Dependency is terrible so close yet so far.
Why not? Many people DO take it for many years - after 15 years of PMR and 10 years of pred, if that is what it takes I'm fine with it. I've been on far worse stuff ...
I didn’t mean it the way it sounded PMRpro what I mean is I can’t stay on it because I’m having a hard job getting off or for the sake of it only if i need it for my PMR. I have Gabepentin morphine co-dydramol diazepam for my separate pain plus a load more meds so if my PMR burns out then yes I do want to get off of it and I can’t stay on it forever because I feel safe. I’m only sorry that some have to do so.
x 2 so far this morning. I hate it. I am also aware of some tension in my body and aching due to the tension. If it gets to more than 4x per day I will rethink.
You have given them a kick, they have kicked back now increase and rest from it. Each drop at 8mg down using 0.5mg took me a couple of attempts. I just went back up, settled then tried again. Eventually it was ok and didn't squeeze me. 💜
I loathe to suggest this but l think you may need 10mg just for a couple of days, then back to 8mg
You’ve really hit a wall PMRpro will be on line at some point & I'm copying her into this for her opinion.
MrsN
• in reply to
IdasMum
I've just had a thought! Did you take your dose this morning? If you don't pick up, l'm beginning to think you might need to see the Out of Hours GP for Medical Advice.......
• in reply to
I can see that. I forgot my dose this week and couldn't get warm and got into bed for 3 hours while the pred started it job. Idasmum...you may have missed your dose. Even if you haven't something is going on if you are having these turns. Have you had any issues not getting a 24hr dose? I would be sorely tempted to take a full 8mg in case you have a duff batch or have forgotten. Unless you have other health issues you know about.
Ouch...I did take my dose AND this post triggered me ! I read it, felt a little scared and I was off
My doctor is on holiday, I am reluctant to see someone who doesn't know me or my history. I am sure I am 'well'....just responding badly to the adrenal reawakening.
If I have any more today, I'll re think and I will see what Mrs PMRpro has to say.
Yet is feels like I am flooded with adrenaline, flight or fight, each time. ??? x
Edited to add: Not all the symptoms of fight or flight. No pounding heart, no shaking. Just heating up and sinking feeling which I am breathing through.
this is all so enlightening and yet concerning. I am now on 15 from 20, thinking I'm so smart ...and now I read about the cortisol issues [mine was almost non-existent BEFORE I was diagnosed with PMR and started the prednisone anyway. I do have an endocrinologist I saw at the beginning and wondered why, and now I will begin seeing him more often as I taper down in the future. is there no end to this? I am the one on Leflunomide along with prednisone in an effort to get off the prednisone since I've have 4 stress fractures since starting the steroid. Some replies have been that the Leflunomide was not a good option, but my rheumatologist nixed Methotrexate? because of liver issues from years ago so we are staying the course. Maybe I'll slide right past all the cortisol problems? One study I found said Leflunomide was a very promising option in recent studies for PMR...........wish I could find it again.
Due to significant morbidity associated with prolonged exposure to GCs, adjunct immunosuppressive medications have been evaluated to assess their GC-sparing effects in PMR. While disease-modifying antirheumatic drugs (DMARDS) have been successful in the treatment of other inflammatory conditions, insufficient evidence is available to suggest that hydroxychloroquine (Plaquenil, others), azathioprine (Azasan, Imuran, others), or leflunomide (Arava, others) are beneficial in the treatment of PMR. Methotrexate (Otrexup, Rasuvo, others, 7.5-10 mg/week) has been evaluated in 3 prospective randomized studies with variable results regarding steroid-sparing effect and reduction in disease relapse risk.16-18 In clinical practice, methotrexate is not initiated routinely at disease onset but can be considered in patients at high risk for developing GC-associated adverse events, or in patients experiencing 2 or more relapses.
Metformin can lower blood sugar enough to have hypo- I have been taking it for nearly 20yrs.
Just thinking if you take it and pred not having same effect of blood spiking at 7mg and/or you have missed a dose, it might be floating around 4ish. Now I am at 6mg I have stayed having a couple of hypos. Feeling like you are sinking, detached, not quite yourself, not very hungry and refusing to check your blood sugar are symptomatic of hypos.
I am type 2 Diabetic (since 4/5 months ago); so far Metformin has been incredibly helpful in all my symptoms including helping reduce my inflammation.
I am getting these 'turns' in the morning, I don't take Metformin till after midday meal.
Way back before we changed our regime to Intermittent Fasting, I'd get hypos (not always) before our evening meal. Trembly, irritable and clumsy. No sinking feeling, no overheating, no disconnection or visual auras.
I understand your concern and do believe blood sugar wise I am fine.
I'll go and get check tomorrow just in case I am being obstinate
Wanted to say thanks so much to Ida and everyone - hadn't occurred to me that reduction pain might be due to Adrenaline levels going down, also really relieved to know that others have ( I think ) absences of brain, if I've read right. So useful to know about different pain reduction methods - will try to get more tablets for sure. I'm sure my early am, anxiety is Adrenaline induced, also low mood when tried 4mg too quickly - back on 5. Phew! Walking helps a lot , also determined to again try meditation which I found helpful a while ago - how to stop moving too fast or coming to a complete halt?
We nearly all have pred brain at some stage on this journey. For me it means I forget words and rely on OH to fill in the gaps!! My other issue with pred brain is putting stuff away in places they dont belong belong like my repeated use if the oven as a fridge. If it makes you more vulnerable then try and adjust to going certain things with someone without pred brain.YBB
I was getting some PMR upper leg trouble back first thing in the morning but this has stopped.
I have had the feeling some might interpret as fear in me I thought it was
melancholy and sort of stomach pain like hunger but later began to realise it was actually a feeling of being anxious and this seems to fit with other feeling fear.
I don't do the 8mg one day and 7mg the next this I found was too much for me I cant survive on 7mgs at all I would flare up like an Icelandic volcano and end up back on 60mg or something extreme.
I take 7.5mg every day and if I'm ever going to drop from my 7.5. I will go to 7.25mgs as in 1 x 5mg pill + a ¼ of a 5mgs = 1.25 ( I do this will a pill cutter) and 1 x 1mg pill each day
then to 7mg each day etc I have found dropping like this works well for me.
The down side is you have to be careful with the maths and remember to take the right dose
So I have a diary I pen in each day when I take the pills what I have taken.
This way I would know if I have missed taking them and have a reference of what I should be taking you could just mark in on a calender on the wall instead.
Have hummed and hahed about posting but thought I should let you know my thoughts overnight and this morning.
Firstly had a great sleep overnight. (I had two episodes in the night but slept on after). I woke feeling refreshed and so far 3 hours in, no episodes.
We're both retired nurses and are both persuaded that my adrenal glands are firing off in response to pretty benign situations and I just need to wait it out until I get used to adrenaline again. I imagine and hope it will settle down and I won't have the 'fight/flight' response unless I need to (ie: sabre tooth tiger heading towards me or similar :D)
It was and is frightening and unpleasant to have thoughts it will happen again AND unless it gets completely out of control, it won't kill me.
I have upped my 7mg doses to 7.5 and will stay on 8mg x 4 and 7.5mg x 3 until this settles.
Thank you all for your concern and support over the weekend. I really appreciate it and WILL definitely go to Dr .
Glad you had a good nights sleep & are confident about what’s going on.
As Ambassadors/Moderators we can only pull on our own experiences, myself with Adrenal Issues & My Mum’s Experience of an Addisons Collapse & Hidden 's Personal Experience of Diabetes.
You actually have the edge on us being a Nurse but l do hope you feel better soon.
I think the worrying thing about this is the inconsistency from one day to the next I don’t know whether it’s just me but one day I can have a good supply of energy, where it comes from I don’t know, but then the next I crash I feel unwell very tired, clumsy, frustrated, low and a waste of space. No two days are the same and it’s hard to plan ahead.
A lot of us feel like that, l’ve had a good day today, even managed a couple of hours at the RAF Museum, yesterday l didn’t get up until well after lunch!
I do think it’s Day On/Day Off & we have to go with the flow!
The only thing l wonder is, on a ‘Good Day’ do we do too much & then pay for it by having a ‘Bad Day’?
You have hit the nail on the head... no pun intended MrsNails. My pain clinic talk sessions always taught us pace yourself. I thought and still do, you have to be kidding if I feel good I’m going to enjoy it and not hold back chances are I’ll feel rough the next day but so be it mentally it will give me a buzz and I might have had a bad next day whether I’d rested the day before or not. Glad you enjoyed the museum that’s my sort of thing!
I always trying to have a rest day after a busy day. There is no doubt it makes me crash. Sometimes, despite also going to pain clinic and learning pacing, I will do 2 busy days back to back, say at a family weekend. I will often end up in bed for a few days after driving too. I just plan all the resting and let them plan activities. Instead of doing all the activity I will do 15mins.
You sound very sensible but unfortunately most days I’m washed out or worse when I’ve done nothing the days before so it’s not something within my control that’s why when I do get a good day I make the most of it. Energy is spasmodic and with the pain I have (not so much pmr) messes my whole system up.
It’s finding what’s works, l hate being rushed while l’m getting ready, so l always factor an extra half hour into when l’m leaving.
When my granddaughter, who’s now 13months old comes, l always have at least two hours on the bed with her, l’m relaxed & she usually has a nap but it means we can have her, otherwise l’d be in a heap.
I hate the way PMR has stolen my life, my energy, my personality but it is what it is, so we must soldier on regardless.
Thank you for your encouragement. It’s the case of non acceptance I suppose but I do as you say in many respects but it’s so hit and miss that I can feel great one minute when I’m out and with little warning feel terrible and drained to the point of dragging my body around to get home ASAP. I just need to sleep. Very strange and so inconvenient. We haven’t been on holiday for 13 years because it would wreck me just the preparation to go.
I’ve managed a few holidays when l was better than l am now, always a Cruise & l packed well in advance with all my Clothes on hangers in poly bags but the thought of that now even fills me with trepidation!
But, we have a five day Cruise in October & I’m going to get it organised during September!
It’s onward & upward for me this morning, neighbours are coming around for coffee.
Your cruise sounds lovely. Good idea to pack WELL in advance. Sometimes you just have to bite the bullet. Hope you had a nice day.
Decorating in our house, well we’ve employed someone to do it but I feel just as exhausted as if we were, trying to keep our dog confined plus ourselves. 🌸🌸
Dogs and decorators or builders....when they were putting a kitchen in the had the floorboards up to the "false" cellar. The dog went missing you was 3 ft under the kitchen floor. 🙄
You can do it mrsN! I pack for my sister's 4 days to a week before otherwise there's all sorts missing. I do sympathize with holding coat hangers up. I have to empty shopping bags in 3 attempts as reaching up to the fridge deafens my arms. 🌻
You have to make use of energy when it's there when you have a couple of health issues that cause fatigue and pain. I have fibromyalgia and OA in the spine, chronic back pain following surgery in '99. It's trying to work out which condition is causing what symptom on any particular day I find the hardest. 🌻
You sound just like me Poopadoop I have more or less the same conditions although fibromyalgia hasn’t been explored in my case. Me too it might be any thing that crops up on a given day but I know it messes with your life that’s for sure.
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