Advice please from this wonderful community.... I've been on pred for a couple of years now, reduction of steroids was smooth, I had a few achey days then recovered and I suffered no fatigue at all. Then about a year ago when I came down from 13 to 12 and hit a wall. Massive fatigue was the only symptom. I did the classic return to last dose at which I'd been comfortable, and tried again, in .5 mgs. The doctor referred me to rheumy , who, to help reduction, put me on methotrexate. ( which didn't help, I wanted to stop it, they upped it) Over a year I've finally managed to get to 11, and am now trying to get to 10.5.mg.
Again the fatigue, I spend whole days lying flat, like a toy with the battery removed, no energy, no interest in anything. But this is the strange thing, every evening about 8.00 I come round, as if my battery is suddenly there, I'm switched on again as a person, I can think about my life, I come alive. Till bedtime, about 10.00. Then again in the morning I drag myself out of bed, I take my steroids about 7.00 and the pattern begins again. I can't do anything.
So I wondered, does this strange waking, non fatigue pattern, mean anything ? What causes it ? Why did I change from achey days then recovery to being total wiped out every time? Can I tweak it to give me life at another, more useful time of day ?
Or is it meaningless, and i should just get on with it ?
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Ann1A
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I have every sympathy with your difficulties and only wish I had some proper answers for you! Like you I suffer from severe fatigue, tend to ‘wake up’ in the evenings, even into the early hours of the night, when I start doing some of the little tasks that I couldn’t do during the day. And similarly, I have hit a brick wall at 11.5mg.
I’m trying to pace myself very carefully, follow a slow taper, and eat as healthily as I can, cutting down on carbs especially. I’m getting a little bit of enjoyable exercise by dancing (slowly) to my favourite music, and doing some light gardening when I can. The joy of being outside does perk me up, as does music and poetry. And I’ve found that going out to one or two parties hasn’t been as difficult as I anticipated, because I’ve planned in my rest breaks etc.
I think someone posted recently about ‘making the container bigger’ (tangocharlie?), that is, making PMR GCA seem less by putting it in a bigger context….
I’m not sure whether this is of any help to you but I want you to know that you are not alone with this fatigue. I hope others come along soon with suggestions but in the meantime I wish you all the best xx
THANKYOU ! Yes, it DOES make me feel better, at least, that it's 'normal for this condition. I am still hopeful that the weird waking spell is a clue to something, goodness knows what, and someone will pop up with an answer for us, but meantime I'll just carry on ... thanks again for your reply.
I do exactly the same. Misery in the morning, flat in the afternoon and enough energy in the evening to do the dishes and air a load of laundry. I sit up til all hours and then struggle all the next day. I need 9 hours sleep and my body will take it when it can. I sleep poorly till 4 am then take something and try for 4 more hours. I gave been on Pred for 3 years. Started on 30 for suspected GCA and reduced, getting stuck at 15, 10 and 7. Took months to get past those. CPR at 15. I have been between 6 and 8 for over a year, where 6 is collapse of eyesight focus and leg wobbles, 7 is a struggle with aching and 8 is relative peace with some aching. Have lower back pain with tired hips and sciatica. nothing works properly! Eyes never quite in focus. Feel it will never end. Mother and brother both had this.
Thankyou. I am sorry to hear that, tho I find it helps to know others have similar symptoms, I think it makes you feel its 'correct' to feel like this, at this stage. And so, slightly less scary.
I am SO sorry to hear those symptoms, it sounds awful, especially the eyesight. I'm trying to map the figures (mgs of dosage, degree of fatigue, dates, etc) in a way that will help me get a handle on it, so I can see progress and be less despondent in the bad spells. Its like living on a snakes and ladders board.
Sorry, I should've asked first time, do you wait for your fatigue to wear off before you do your next reduction, and if so, how long does it take ? (I've just finished a spell of feeling really well, because I refused to do the reduction when it was timetabled... my partner was coming to the UK and I hadn't seen him since Christmas. I reduced as soon as he left and knew it would be hard )
In the past the intense fatigue has lasted for maybe a month, and yes, I’ve waited for it to improve a bit before reducing again. But it never really goes away……
Like you I’ve stopped reducing for the last six months (in my case because I had other health problems - a cataract op that threatened to go wrong but was fine in the end - plus various social events that I really needed to partake in) - so now I’m reducing again, I’m really missing feeling better! Honestly if I could stay on 12.5mg I would.
The description of your days and nights feels like a wake-up call to me. It is really similar to my pattern, although I exert some control by having a proper, go to bed sleep after lunch. Some days, I need more than one. I get a bit of an evening but feel pretty awful and exhausted. Once I am back in bed I feel better again and often have my liveliest time, mentally at least - emailing my Australian grandchildren, reading posts on here etc.You have made me think, this really can’t be right. I am taking 7 mgs of Pred. Probably under-dosing by several mgs. Nothing, however, helps the fatigue. Certainly not more Pred. My Rheumatologist says that because I have been on Pred for a few years, it has probably exhausted my system, like being on high alert permanently. She put it better than that, but I think it’s what she meant. She was keen for me to take Methotrexate which I really don’t see enough evidence for and I am sick and tired of being sick and tired. You made me wonder whether I should bring forward my appointment with my Endocrinologist to see if this is anything to do with my Adrenal system. I know I should be getting enough Cortisol from the Prednisalone, but it is a very complex system and it is the one that maybe worn out. A bit like the pump for my central heating system that I can hear struggling to push the water through the pipes. The plumber comes next week. I wish they could sort me out too.
Sorry, this thought stream was longer than I intended.
Thankyou Sheffield Jane, and don't apologise for the length of reply, it feels helpful to know others have the same symptoms, and it seems so specific and weird that I really believe it might mean something to someone. Tonight, for the first time in ages, I am awake in the night, which for me was always a helpful sign that I would be awake in the day too. It was as if there were 'enough and to spare' steroids . I hope you can get your appointment soon, and get some help.
But the only evidence that counts is whether it works for YOU. MTX does work brilliantly for SOME patients but you can only identify who by trying it. You can stop it easily - it isn't like pred.
I have really looked into it and read research papers, nothing has convinced me. I am in constant abdominal pain, of varying degrees of intensity. Colonoscopy only showed age related diverticulosis. Tocilizumab caused the pain to increase significantly when I tried to resume it. Methotrexate also has red flags around abdominal symptoms. Pred also increases the pain in spite of Lansoprazole and food. Antibiotics for yet another UTI may also have contributed to another sleepless night with pain like an internal abscess in my lower right abdomen. I am in that no man’s land of inexplicable symptoms again with indifferent GP input. Clear colonoscopy = nothing wrong. My best bet is a very gradual tapering of Pred. Leg and foot pain are my only other symptoms apart from constitutional symptoms and debilitating fatigue, that is.All this seems to fit is steroid damage.
I have read papers that have said it is of doubtful value. If Sarah’s research study shows something more definitive I may reconsider. If I didn’t feel so rough I might be braver.
You'll have to wait a long time - won't be much in the way of results inside 5 years!
The studies were all small ones, It is obvious from observation that SOME patients do do well but it is only a small number relative to the whole population. In a small study with maybe 50 or 60 patients there might be only 2 or 3 of the success story patients - outweighed by the majority it doesn't look impressive. If the study is able to recruit a lot more patients it looks better. Which is why I keep saying you HAVE to try it and not just reject it out of hand on the basis of som every small studies done some time ago. If you don't have intolerable side effects you may be one of the responders and so it was worth trying.
Thankyou. It's a complex thing, isn't it, one's relationship with medical profession. There's a learnt response to do what the doctor says, partly respect for them as professionals and partly a fear of them withdrawing help if you dont.
Am I right in understanding that you are actually sleepy during the day? I’m not - my fatigue is more like weakness really, and if I go to bed I rarely sleep. Only sleep 6 hours max at night too - too busy being awake thinking and doing stuff I didn’t do during the day!
Actually if I go away, as I did last weekend, I can often sleep eight hours. I find change of routine generally helps with sleep - but the weakness stays the same - sometimes I just notice it less if I’m distracted as I was last weekend….
Thanks for this. I am usually falling asleep after lunch. It’s a trained habit now. If I can’t sleep an eye mask and low volume audiobook tends to do the trick. The ritual of a formal rest helps in any case. I am going through a phase of sleeping badly at night, this has been good in the past. I currently experience at least one night a week of no sleep at night at all. I think this may well be Adrenal related. This is an ever changing situation.
I can’t put all my sleep problems down to PMR/GCA/pred as I’ve always been a night owl and in the good old days often used to work more than one job at a time, pick the girls up from parties at 1am etc. I think you’re right though. I probably should schedule in more rest and try to take some control…..
Will be interested in what your endocrinologist has to say xx
Like you we have a plumber coming next week....he's replacing our very old boiler....no, I don't mean me!......but boy is this 6.5mg very tough.....pity there isn't a supportive drug to help us lowering from 7mg.....everyday the same struggle....Hope when I get low enough I will eventually see an Endocrinologist....
I see you take your Pred at 7am and you are still on a fairly high dose (relatively speaking). That tells me that your PMR is still fairly active. I am well known for being a strong advocate for very early am dosing because the science makes sense. Could you try to take your Pred between 1am and 3am? That way you stand a chance of dampening down the inflammation before you start your day. Tiredness is a complication of inflammatory illness. I also wonder about Melatonin release?. This hormone is produced by the pineal gland and is responsible for regulating our sleep-wake cycle and is normally produced in response to low light levels. I've just done a Google search and there are several papers on the subject of corticosteroids affecting Melatonin levels. Corticosteroids do cause a reduction in Melatonin serum levels. Patients with Cushings have disrupted Melatonin production and the circadian rhythm of production also becomes disrupted. I admit that in one of the papers the subjects had multiple sclerosis and in another the subject was zebra fish but the evidence is out there.
You can buy Melatonin in pharmacies and it is used to reset the body clock in people who fly a lot and get jet-lag. These people however probably aren't on steroids!
Can you buy melatonin OTC in the UK? I thought it was prescription only for short term specifically identified cases. You can buy it here - got some for my daughter last week, silly dope is prescribed it but left the pills at home!!
Thankyou so much for your detailed reply. I did try taking my pred at 2.00 am for about 6 months, for me it didn't seem to make any difference, or at least none I could see, and when I finallybegan sleeping at night, I needed it so desperately I had to prioritise that. (Once I woke by alarm for meds, that was it I was awake for 2 or 3 hours, then doze till normal 6 ish which was only 5 hours total a night ). But I will happily try the other ideas thankyou.
I just wondered if by doing that the pred might get into your system and take effect much earlier in the day when you need it - and the extreme fatigue coincides with being in bed. If it doesn't work you can always go back.
Is it ok to try splitting 6.5mg dose even though I have adrenal suppression.....or is that risky, say 5mg then 1.5mg.....in another couple of weeks will try 6 mg....
Don't see why not, especially if the 1,5mg is late afternoon or so - then it is out of your system by midnight and won't affect triggering adrenal function.
No, they only started when I dropped to 6.5mg, and mostly happen if I think of something worrying or upsetting.....I do deep breathing to calm things when it happens... ..but won't hesitate to be checked out if they escalate or worsen...
Have you got a pulse oximeter? They aren't a lot of use BUT it is comforting to have an idea of pulse rate/rhythm and how long it goes on - and if it does get too scary you can seek some informed help. I have become maybe a bit blasee - as long as a tachy isn't above 120-130 and bradys don't last too long I just sit it out. Easier now it is just me as I can just say no if I don't feel able!!!!
Will look to get one of those....ha ve tested blood pressure every few days, no change there....I can understand now why people want to live o ffgrid, away from everything...must be very calming!
Have a friend coming to pick me up today...haven't met for a long while......exhausted just getting ready!....my jaws will get a good workout!......
It is very nice sitting looking at UK TV and knowing it is not a lot to do with me. I didn't renew my postal vote registration - they don't send me the stuff in time to get it back anyway ..
Hi Anne, my “wall” is at 7mg. A few ideas that helped me…
- Split your dose, am and pm. Slightly larger in pm if needed. This really helped me progress.
- Try 30 min of light activity when waking, and see if fatigue lessens. If I don’t get moving, nothing in my body changes, but light activity has a positive effect. Stretches mostly.
- Go outside, especially when sunny. Fights the “useless” feeling, provides sensory stimulation without any real effort.
Whatever you do, don’t be passive. Dr.’s used to say about many injuries; “just rest.” They were wrong. Light movement helps more.
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