I know a lot of people struggle with adrenals at lower doses but this is really getting on top of me! I am shaky and panicky a lot of the time and have next to no energy. One good thing is that, touch wood, I’m sleeping better. I practically crawl up the stairs to bed at around 11pm (3am used to be my norm) and generally pass out until about 9am (sometimes waking briefly for painkillers for my OA ).
After breakfast I manage to fit in a few (mostly low energy) jobs like making shopping order, emptying dishwasher, then it’s lunch at 1.30 or so. By 2.30 I’ve usually fallen asleeep again on the sofa and I crawl upstairs for a two hour nap. And rinse and repeat 🥺…
I am reducing from 6.5 to 6mg on a slow taper and have never felt fatigue like this (except during other acute illnesses). It’s really getting me down and I’m starting to dread meeting up with anyone, or any sort of social occasion. My poor OH 😦
So I’m putting this down to sluggish adrenals…..and praying it won’t carry on like this for another year.
Anyone got any advice or suggestions please? xx
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Never having got that low I can't really say I know how you feel but I can tell you that SnazzyD really does know what it is like and I'm sure she will reply.
When did the extreme fatigue start - is it just since you started this taper or was it there before? Have you spoken to your GP about it? Have you got any signs of the PMR/GCA?
You were on 6.5mg in May 2023, and 6mg 7 months ago - have you had flares? Or just been plugging away at this sort of level?
This last eighteen months have been very busy with family issues so my records haven’t been what they might be! However, looking back, yes I flared in 2023 and went back up to 9mg. Was then on 7 for about a year and started this taper towards 6 a few months ago. Spoke to GP at time of flare but not since. Saw rheumy in sept this year. He says he thinks I don’t have PMR any more but that I have OA. At the same time, he cautions me to look out for GCA signs and contact doctor immediately in that case. He also said he’d contact an endocrinologist about my fatigue etc but I’ve heard nothing yet.
I do have some pain but I agree with rheumy that a lot of it is OA.
Looking back also, this level of fatigue has only really started since I had Covid in July 2024 and flu immediately afterwards. So maybe that hasn’t helped…..
I don't know - these rheumies who think they can tell that PMR has gone away!!!
However, I think your body has been trying to tell you for about 18 months you have reached your destination. When symptoms flare up a few times at about the same dose that is the idea of the tapering process in titration - you get to a dose at which things become noticeable again and immediately go back to the last good dose.
AND, perhaps more importantly, the fatigue is almost certainly a post-viral effect of the double whammy of Covid and flu in the summer. It MAY be linked to a lack of corticosteroid spike in response to severe illness - especially if you didn't adopt the Sick Day Rules at the time - but even after vaccinations, both Covid and flu can have very long lasting effects. A 6 month recovery isn't unusual and it can take even longer.
Yes! I don’t see there’s any way he can know whether the PMR is ‘gone’. He did no tests or investigations (not that they always show much). He just established on observation that I have severe OA and seemed to decide it was easier to attribute my problems to that. Even so I don’t think he was confident in his own ‘diagnosis’, since he gave me quite the lecture about getting immediate medical help if GCA symptoms recurred…..
Re the taper/ titration, going down to 6 gave me a little pain, mainly in my hands and neck, but it’s resolved now so I’m thinking that was more my body adapting rather than an actual flare. Came on pretty quickly and lasted about three weeks. What do you think?
Think you’re right about the Covid /flu. I did adopt a version of the SDR. Went up to 10mg for a week and felt almost a burst of energy, enough at least to get paracetamols etc for me and OH and to ensure we ate and drank adequately. That little mini burst faded the instant I dropped down to 6.5…..
They say it is a rare gift these days!!! In which case, I'm glad I'm old enough to have got it. Irritating watching the effects of a lack of it though!
When the problem starts immediately it is most likely steroid withdrawal - your body not happy at the change in its usual dose. Many doctors will say it lasts a few days, it may do in some, but I also know people who took as much as 3 or 4 weeks to get back to feeling like pre the change in dose. As long as the feeling is stable or improving, you're probably OK to stick it out. If it deteriorates - don't force things. Go back to the previous dose, wait a month or two and try again. It is also why we say you need AT LEAST a month between changes in dose and there is nothing wrong with longer. Always feeling rubbish isn't good for you and a bit of respite won't harm.
This, too, shall pass. I found the fatigue terrible and then suddenly, seemingly all at once, I felt better and it lasted even with the next taper. I finally got into the mindset of just taking care of myself and going with it -- as the philosophy goes, to the extent that we fight reality, we suffer. For now fatigue is the reality but chances are your body will start adapting and your adrenals firing up. I followed some dietary advice, such as a high protein diet within an hour of awakening and a little protein every couple of hours -- I started keeping hardboiled eggs in the refrig for this purpose. Protein powder to make a smoothie with. Also I found it helped to try not to keep monitoring for small changes up or down, just as long as the fatigue wasn't getting worse. Suddenly one day I woke up and got through a normal day not tired.
Not really in the intermediate acting corticosteroid range. Cortisone and cortisol are short-acting with a biological half-life of under 12 hours and are not frequently used in rheumatology as they qould require multidosing per day. Prednisone, prednisolone, methylprednisolone, and triamcinolone are intermediate-acting with a biological half-life of 18 to 36 hours so ideal fo once daily dosing. Then they are chosen according to disorder. Triamcinolone is more dermatology. Methyl pred is used when a soluble form of steroid is required as in injections. They are all out of patent so then it depends on the large scale purchasing system used in the NHS.
If you’re on Prednisolone whatever the dosage, it will bump up blood glucose and interfere with carbohydrate metabolism! IDK.
A nightmare 😱 as a type 1 diabetic trying to keep my BG within the target range of 3.9–10mmol/L, 7-8 insulin injections/day plus constant monitoring of BG levels using a digital Libre2 reader and sensor. Lucky to have this rather than fingerprick tests.😱
Currently on 30mg/day for a fortnight then tapering to 10mg/day.
I have SLE, SCLE, primary hypothyroidism and have been a type1 diabetic (autoimmune) for 35 years.
Non diabetics amongst us still need to watch BG levels and carb intake to prevent getting diabetic or becoming a full blown type2 diabetic? Important.
Steroid induced diabetes does not inevitably turn to Type 2, they have different causes. It is hard for people who are already diabetic, not denying that. My Hba1c ranges about 39-ish, has done all the time I have been on pred, about 16 years now.
It's not a given it will happen. It's not been a problem for me, the four years plus I've been on Pred my HbA1c has actually gone down, 35 at last test from 39 four years ago. No real change in diet either.
I’ve been on 38 or thereabouts throughout too. Although I do try to avoid sugars and carbs, it’s really not been a problem so far 🤞Guess we’re all different…
Prednisolone is favoured for GCA/PMR because it has just the right potency to be tapered from a starting dose of between 60 mg/day and 15 mg/day using 20/10/5/2.5/1mg pills. It's also very cheap.
Prednisone does exactly the same job at the same dose. It is a bit kinder on the stomach, a bit harsher on the liver, and somewhat more expensive. It also takes effect roughly an hour later than prednisolone, which is unfortunate at the start of the day.
Both these drugs have a half-life of about 3.5 hours in the blood. That means a single dose taken upon waking (ideally with food) is about 95% gone by the time the adrenal glands should be kicking (roughly 3am). That helps to minimise insomnia and adrenal insufficiency.
If you’re on Prednisolone whatever the dosage, it will bump up blood glucose and interfere with carbohydrate metabolism! IDK.
A nightmare 😱 as a type 1 diabetic trying to keep my BG within the target range of 3.9–10mmol/L, 7-8 insulin injections/day plus constant monitoring of BG levels using a digital Libre2 reader and sensor. Lucky to have this rather than fingerprick tests.😱
Currently on 30mg/day for a fortnight then tapering to 10mg/day.
I have SLE, SCLE, primary hypothyroidism and have been a type1 diabetic (autoimmune) for 35 years.
Non diabetics amongst us still need to watch BG levels and carb intake to prevent getting diabetic or becoming a full blown type2 diabetic? Important.
I complained about fatigue at some point, can't remember my level but do remember being tired (not like you though) at 4 mg so it might have been then. Blood tests at the time found nothing amiss except low iron. It's worth getting some bloodwork done in case it is more or other than low adrenal function, and something treatable with other than pred.
Off pred completely since beginning of February this year and functioning pretty well for a 77 year old I think. So it does get better, I don't have much stamina and this will be the case forever, but in retrospect I never was an energetic sort, although deathly fatigue is a whole other animal.
You’ve described what I had and I did wonder if it would ever end. It took about a year for the worst.It was worst between 7-5mg. My endocrinologist agreed with my hunch that it was too low to feel ok but the Pred dose was still high enough to suppress the adrenal glands. Until I slowly got out of that dose range I felt wretched. However, you were at this point and similar dose 2 years ago. What has the dose done in the meantime and how have you been in other ways? Has the GP checked things like vitamin D, B12 and general bloods?
Thank you so much for this Snazzy, it’s so reassuring that you did get through it! Re doses etc I’ve tried to summarise for PMRpro above, and I think I should emphasise that the family problems have been quite severe, concerning abuse etc (not towards me) so I couldn’t avoid involvement.
Vitamin D and general bloods have been checked 6 monthly prior to denosumab injections, and B12 at my request. My GP surgery does what it has to, it seems, no more and no less!
‘Wretched’ is exactly how I feel….but you’ve made me feel better already 🤗xx
Sorry, I missed your reply to PMRPro. I was feeling rather rough after a procedure on my face a few hours prior! The hole in my face is fine but I had a systemic reaction, much to my surprise and frustration.
I think ongoing mega stress is dire at the best of times and will take its toll on anybody. Throw in the effect of low cortisol/Pred and one can feel all over the shop but in a weird flat yet agitated way. My body certainly thought it was under threat and no amount of rest or pick me ups made any difference. It certainly was a leap of faith to keep reducing to get out of the limbo dose range but I felt I had to. It can be a dark time made worse because nobody dealing with you can comprehend just how without resources one feels. I never know whether to tell people how long it took for me because it could be demoralising, but not enough is said about how long it can be which risks people feeling like this is it for life and be hopeless.
Like PMRCanada I made my tapers super slow and even when the endocrinologist said to do 1mg per month from 4mg, I said something like, “not on your nelly, I’ve got a life to survive”.
It is demoralising I suppose but this forum does try to tell it how it is - and when you think of the other potential causes of overwhelming fatigue, surely knowing that "just" reducing pred can underlie it can be a positive thing? It's why I always refer to your story.
But there is also the Covid/flu double whammy from July to consider - not to mention the obviously severe mental/emotional stress that is going on.
Thank you Snazzy this so hits the nail on the head !
All of it really, such that I don’t know where to start. I too have felt that I couldn’t talk about it for fear of either being demoralising ( or sounding whiny 😱)
I did try to talk to my closest friend last night but she came up with a theory that stress can cause illness. I’m sure it can, but this adrenal problem is real and it’s physical. It’s causing stress, more than being caused by it, I feel. In the end, I thought well, if even she doesn’t understand, who will 🥺 And then of course I knew….the lovely people on this forum will know what I’m talking about., and you do, so thank you 🙏 x
That said, no I don’t have much emotional support. I have the role of being the supportive one, which I’ve always loved and which is a big part of who I am. I always imagined myself working in retirement, or at least volunteering in something. One way and another I’ve had to gradually give all that up (apart from family, but I’m less able to help even there). So yes, I should look for some emotional support as a stand alone thing, I think.
"I did try to talk to my closest friend last night but she came up with a theory that stress can cause illness. I’m sure it can, but this adrenal problem is real and it’s physical. It’s causing stress"
The adrenal problem is that they CAN'T respond to stress as they should, which makes us more vulnerable to any stress - and it upsets us, causing more stress in an ever widening spiral. I had an absolute meltdown yesterday because of trying to get info from HMRC - after waiting ages on the phone with what is hardly CALMING hold "music" I was then told the guy couldn't help me as the system was sending everything to SelfAssessment not the right place. Call back on Monday - along with everyone else. I then had a lightbulb moment and called my accountant's office and got one of the accountants (only one there on a Friday late afternoon I think) who explained how to find the page I needed to set up a SEPARATE online account to the usual one. So simple, you need a special account, this is where you set it up - and in less than a minute I had the number I had to give the tax technician. But NOWHERE could I see that very simple bit of info. All I could see implied that you got there from your HMRC account - no mention anywhere, And I end up with a meltdown every single time there is something new to decode on Gov.Gateway!!!!
Oh dear PMRPro, I do feel for you. I used to dread contacting HMRC and am grateful I no longer have to do so!
And you’re so right, it’s a vicious circle, I don’t respond well to stress because of the pred, and then get further stressed by my own inability to deal with things…..Pacing is of course good, but not everything can be paced! Hope the system you’ve found works well for you 😊x
I contact them as little as possible, I happily pay the money for the accountant there and Tax advisor here to do it for me. But I had to set up the account to get the number for them to do the rest. If they had simple crib sheets it would be fine but everything is written in jargon isn't it! It isn't even as if I'm not tech-savvy - pity help most people my age!
Its so difficult to deal with stress, especially severe, as our coping mechanism is not up to scratch. I know myself having physical and mental stress going on, wretched is a good description. I hope you improve soon. Best wishes. X
Tapering at this dose is when I first encountered sluggish adrenal response. First time I had fatigue, nausea, vomiting, diarrhea, moodiness. Panicked thinking they would hang around but they didn’t. I doubled my 7-week taper to 14 weeks, dropping only .5mg pred, but it did help to slow down.
I made it down to 5mg where I felt wobbly for 4 months, then started a new job. The stress involved meant a return of the dreaded adrenal insufficiency symptoms with added low blood pressure while training and during the first month! Yikes! Two pred bursts later and it looks like 6mg is my sweet spot allowing me to work. Hoping as I settle in my stress levels will lessen but o will be telling my rheumy I have no intentions of tapering further in the short term future.
One of the most difficult aspects of these symptoms was my mental dysregulation. I was impatient, and when frustrations arose at work I would come home feeling overwhelmed and hopeless. I do not get the support I need during these times from my husband or children, but a chat with my good friend or aunts does help me through the difficult times. Sometimes I get home and just go straight to bed as I don’t want to be around others when “I’m not myself” (if you know what I mean.
Upping my pred from 5mg to 6mg made a positive difference, and at my GP appt today he reiterated that 1mg can provide a better/necessary quality of life. He mentioned many patients who remained on low dose pred for 20 years and I’m experiencing very few side effects even after 6+ years. He also said he had patients who found it very difficult to taper below 5mg as they felt awful from returning PMR and low adrenal symptoms. My rheumy may have a different view.
I do hope the symptoms lessen/disappear. It’s truly awful! Glad to hear your getting more sleep…the fatigue demands it. Post anytime…we are here for you.?
Oh, I do understand you when you say you “don’t feel yourself”. That’s so important and so demoralising.
So too is what you term mental disregulation. Again I think I can connect with this…..usually for me it expresses itself as frustration and some depression…..I was at the GP surgery this morning for a blood test and found myself wiping away tears of generalised low morale….not good in public, though no one seemed to notice.
Thank you for sharing your experiences. Our medical services locally are chaotic but you’ve made me think I should insist on a face to face appointment with a GP. I haven’t actually seen one for probably years, they only ever respond with phone calls, and really I don’t think it’s good enough.
I should have used the term “emotional dysregulation” as indeed, it is my emotions that seem to be difficult to regulate when feeling frustrated and sad.
Hope you get a face-to-face appt with your GP sooner than later. Mine is fantastic and I always feel better after discussion with him. Today he had a nurse practitioner with him observing, and we covered 6 items over a 20 minute chat. I felt heard and not rushed….he is very compassionate.
"not good in public, though no one seemed to notice."
Why not? We aren't automatons, holograms who always function perfectly - perfectly in our view at least. And tears are an important release - or a signal that we need someone to show car fore us.
I think in my heart I knew I needed care, and I hoped someone would offer it (half embarrassed though I’d have been). However at the surgery it’s like going into a car repair shop - they do the service (in this case blood test) and I honestly think even if I’d been bawling my eyes out, no one would have said anything…..Awful really!
Did I miss it? When you decrease, how long do you stay at the new dose? I remember being overwhelmed by the idea that I had to put my right foot in front of my left~! I didn't do much. I would stay on new dose 4-5 weeks or longer until I was very comfortable. It does pass, and with your sense of humor, you will either laugh your way through it...or maybe sleep through it. I did get to zero, but I already know that won't happen again and I never had a 'zero' goal and won't go there again.
This time around, I'm using DL's DSNS method.....very slow and maybe stop at ??? Time will dictate. You take care, and I'm sure Covid and flu drained you!!....have you thought about just staying where you are for a bit? Have you had a chest x-ray? Keep us up to date...when you wake.🤣😅💞
No you didn’t miss it, I haven’t been posting much. I got down to 6mg last year but flared so ended up back at 8/9 (somewhat lost in the mists of time…..). Now that family issues are beginning to resolve 🤞I am trying again to taper. Last year taper resulted in a flare, this year, so far so good, the pain isn’t there but the fatigue is! So I guess that’s a positive sign (maybe) that I need less pred for the PMR GCA itself……but now my adrenals are massively playing up.
Re your mention of my sense of humour, I’m wondering where that’s gone. I forgot I had it, almost…..which leads me on to what Snazzy and PMRpro are gently suggesting, which is that accumulated stress may also be part of the picture 🧘♀️
But Pro, isn’t there always stress?? How to know, without trying, whether there’s a sufficient resolution? I did stick at 7mg while there was a court case going on etc….
There is always stress, fact of life, but some is more manageable than others.
When on higher doses of Pred your own adrenals don't come rushing to help you cope with it, so somehow you have to try and mitigate extremely stressful situations as best you can whilst you are on Pred.
We know that isn't easy.. ...as we have all found out over the years.
There is nothing like a bit of stress to kick you back up the ladder~!! You are wise to stay at the higher dose until you can focus on 'you.' Give yourself some breathing room as you taper, and give those adrenals a chance to shape up before they have to adjust again. Have to looked at DL's slow taper? I'm at 40mg now but ....I am using it when I get a bit lower. I think it is easier on the adrenals too.
Go slowly....you can do it, but do it at your pace.xx💞
Getting into some regular exercise may help. I am a 75 year old male and started exercising in June of this year - when I told my rheumatologist this she said that is good as it can stimulate your adrenal glands back into action after my 6 year struggle with PMR.
So far I believe I am doing much better in terms of progress with my pred reduction. Down to 7.5 and feeling great.
I do two one hour sessions a week - both with a seniors exercise class, one is called Stretch and Tone and the other is a Yoga class (very challenging indeed) - I am feeling the benefits of these exercises in other ways too - more flexibility, better balance and improved strength.
One thing I haven’t mentioned so far…. I did the Nuffield Joint Pain programme from April to July this year and after a slow start I did feel better for it. It was two one hour sessions a week with a kind of rehab exercise person, who was very good. However at the end of the agreed three month programme, she told me that she didn’t feel the gym itself was for me (I agreed) and I couldn’t find a class that suited me. So that’s another ‘loss’ and maybe something I should seek to address.
I do have the problem that I can’t drive due to sight problems so wherever I go has to be in some way accessible. I did do YouTube sesssions etc in past years but I can’t get up the energy for them currently….i need personal encouragement (and for adrenals to pick up a bit!)
I hope you can find something close to home or find a Good Samaritan who can drive you.
Thanks and good luck - we all need motivation to keep exercising. I find it’s uplifting to meet with seniors on a regular basis. Many are much older than me so I am inspired to keep going.
I know the tiredness is so depressing…I had to rest 10 times a day. I went to health food store for some supplements for my adrenals…it helped a lot but that darn prednisone kills your adrenals..I finally got off prednisone completely 6 months ago and it took about four months to feel normal again after I went off…I don’t have to nap at all and exercising again…thanks to healthy supplements from the health food store and protein drinks daily….I never thought I’d have strength again but the supplements and adrenal meds did the trick!
So glad you’ve got through it - with lots of effort on your part! I do take quite a few supplements- vits B, C, D, lutein and zinc complex (for eyes mainly), and magnesium and potassium complex (for cramp). I eat well …do I think the best thing I can do is try a very little exercise - s as nd keep coming on here for support 😊
I am not suggesting this (but expect to be panned any way) and am merely thinking out loud. The paper below says there is evidence that alternate-day dosing can help restart the adrenal glands, particularly as the taper passes down through 7.5mg/day of prednisolone. If one's doctor was happy, one could:
Increase one's current dose from 6mg/day to 12, but take it every second day. After a couple of weeks, taper to 11mg every-other day, and so on. The theory is that the no-steroids day helps to kickstart the adrenal glands, which steadily fill the gap with natural cortisol.
I've been on four very different courses of prednisolone during the last five years and have never struggled with adrenal problems (only the disease!) Has anyone on the Forum tried alternate-day dosing?
ADD works in other uses of pred to minimise adrenal problems but unfortunately it doesn't work so well for managing PMR symptoms. It is common enough for the antiinflammatory effect of pred to fade inside 24 hours and symptoms return. Even with a double dose, poor control was achieved on the second day when a study was done looking at it so the result was a very good day alternating with a very poor day without a significant improvement in adrenal function.
I have done 0.5 very slow tapers since I got to 10mg and I’ve been on pred since March 2021 (15mg). Was raised to 40mg in June of the same year due to presumed GCA
Blimey I know how you feel . ! Been on steroids 15 yrs and having gone up and down on my them for the past 10 yrs . My final taper stage has been stuck at between 6 and 4 mgs for the past 5 yrs . I can’t make the break through because of exactly the symptoms you discribe . Adrenal function test have shown nothing wrong . When I get to 4 mgs I am so stiff and fatigued I have to fight to function . Then after 8 wks of struggle on 4 mgs , I decide to up them as I feel I can’t live like that . Then my Dr says no to a request for more steroids ( I only have just a month supply , as in the past I have increased my dose without requesting more, therefore I have no spare . ) so then I start the vicious circle of having to prove that I need them. This means waiting for a call back from GP , normally 1- 2 wks , as it has been triaged as non urgent. Then he wants a blood test to see if it shows inflammation. Which it never does now , that’s another week passed. Then he says he will write to the rheumatologist and ask their opinion . 3 wks later , phone call . Yes you can increase by 0.5 mgs . Mean while I am feeling better back on 6.5 mgs ( medication supplied by a family member who also has PMR and GCA . ) yes I know this is wrong , and I am not advocating anyone to do what I have done . So after the 8 wks have passed on my increased dose , I start the journey of reduction. This all sounds such an inappropriate way of dealing with my illness , but my GP says you probably don’t have PMR anymore . So is my body addicted to steroids. Is there any way than slow , slow reduction , which has failed me for 5 yrs . Because I can’t function below 6 mgs . And I am living my life in a vicious circle, that I am losing control of , and my GP ( different one each time ) is not listening just offering empathy. So sorry nextoneplease to whinge on your post . Just had to get it out today. I do hope you phase passes soon
No need to apologise for telling it like it is! I’m sorry you’re in this position and I really feel your GP ought to take more responsibility for your medication and for your health. Empathy is great but it only gets you so far….
Is there any chance you could see another GP, or even another rheumatologist (privately if possible/ necessary)?
In the meantime never hesitate to discuss things on here.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Will I ever get below 5mg?
Adrenals
Energy back finally 
will these hot flashes ever end ?
Stomach still upset on gastro resistant prednisolone 
