Some advice would be very welcome. I completed a slow taper (over 4 weeks) form 9.5 to 9mg prednisolone 10 days ago and thought I was doing quite well. However, in the last two days I have been completely overcome with fatigue such that I am barely able to function. I also feel a bit shaky which feels like a blood sugar issue around hunger/eating. I was not expecting adrenal problems to kick in at this relatively high dose though I did have low cortisol for some years before my PMR diagnosis (something mainstream NHS always refused to acknowledge).
How long should I expect this to last? Do I just sit it out or do I at some point give up and increase my dose back to 9.5?
Thank you in advance for your help and advice.
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FleetRose
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Although we usually expect adrenal issues to be a problem at a slightly lower dose, anywhere between 10mg- 5mg it can be a problem. Sometimes it’s higher and sometimes lower, it so individual.
As your issues have only just come on - about 8 days after reduction it could well be a combination of both - just too low a dose for your PMR and perhaps adrenals.
I’d be inclined to go back to 9.5mg - and see if things settle… hopefully will be sufficient if it is PMR [although it may not be - so have attached usual advice for a flare] plus it will also give adrenals a bit of a breather.
It could be as some people do feel the lack a bit under 10mg instead of 7/8mg. For me 7.5mg was when it hit. The issue I had was that the 7.5mg was still enough to suppress cortisol production to some extent but not enough for my day. My hunch was to keep reducing 0.5mg over 4-6 weeks to get out of this no-man’s-land. In order to do that, I had to cut down my life rather in order to avoid crippling fatigue or if I had it, to deal with it. By 5mg I felt a lot better but there was still work to do and slower reductions. So my approach was to keep going but taking it very easy with activity which made life very dull until my adrenal glands decided Pred was low enough to trigger them to work.
Have you been tested for type 2 diabetes? You may well be right and it is a blood sugar issue that goes hand in hand with long term steroid use. It is worth having a check up if you haven’t already. I have improved my levels with diet and exercise. It is a bit early for Adrenals but as DorsetLady explains, it can happen.
It isn't common but there are people who find the fatigue and other adrenal symptoms start well above the usual level. So much for the experts at Imperial London who insist 2mg pred is plenty!! Patients do tend to be a bit variable ...
Good advice to have a diabetes test. It should be monitored periodically if you are on pred long term anyway. It wouldn't do any harm to avoid foods with added sugar whilst you are on pred anyway, to help smooth out fluctuations in blood sugar levels.
Though the fatigue could be due either to the pred, PMR or the adrenals. It has been an issue for me throughout, both before I started on pred such that I consider it to be a feature of my illness, and when I have been on pred without even tapering. I was on 5mg for months and then spontaneously the fatigue resolved itself. I felt really well for a couple of months, but it has returned, since I have been trying to get down to 4.5 mg. Though I notice it more towards the end of the day and it is still there if I take a nap. So I think now it is probably because my adrenals haven't caught up yet with the drop and even 0.5 mg can be enough to have an effect.
I think I have just replied to you on another stream...we may have had similar experiences, although I have GCA...I am missing a gathering for lunch through fatigue, but we have to be sensible and self care is essential. Go steady 💐
Thank you for all your comments and suggestions. I have a GP appointment in 10 days so will ask for a blood glucose test though the usual HbA1c is not going to show fluctuations, only a three month average. My last one was ok but a good idea to check. Otherwise I think I will sit it out for a day or two in case the whole Christmas/visitors thing is to blame. You are right, I do also need to cut back on activity. I'm not doing much but am desperate not to lose all fitness and I so miss walking and the outdoors. If this fails I will follow Dorsetlady's advice and go back up to 9.5mg. Thank you again for your prompt and helpful advice.
A random blood sugar test won't really tell you a lot. The pred triggers the liver to release random spikes of glucose from the body stores. These can be quite sizable and if the random blood sample coincides with release it is likely to be high - if it is much later, it may be normal range or even low if the big release of insulin was shortly before. A continuous monitor would show the peaks and troughs - and for a given person could provide information about what is going on. But you can't extrapolate to other times or other people.
This nightmare of fatigue has been happening to me since trying to reduce for 7 mgs a few years back . I am now still up and down from 4 - 5 mgs . Had an am cortisol done recently and it was just ok. The only thing that has been suggested to me is wait it out 8 wks between a very low reduction 0. 25 mgs that’s 1/ 4 of a 1 mg tab . Divided by a pill cutter , that is also not very accurate. Or you can change to hydrocortisone that can be prescribed in smaller doses on twice a day . Which I think I am going to aske for. As I am totally sick of fatigue. And yes it does feel like you have desperately low blood sugar . I brought a monitor and found my blood sugar was normal while I was experiencing these deadly bouts of fatigue. Good luck , sadly it’s just stick at it .
REmember though that if part of the problem is that the PMR is still there - then hydrocortisone may make things worse not better, A not particularly accurate splitting of a 1mg tablets used up over 4 days is fine - part of the skill of tapering is that the dose you are heading for as simply less than the one you are leaving, It matters not if the 1/4mg is .251, .249 or even slightly more or less - over 4 days they add up to one.
yes , in my case all my bloods have been normal for the past 5 yrs , fatigue and possible adrenal insufficiency being the main problem , some how you have to make an atempt to get off the steroids or stay on them for life. If symptoms became worse and crp and ESR became raised again and pain returned then hydrocortisone would have proved to be a wrong option . It’s a never ending game for some of us , not really knowing if we still have PMR or steroid dependency. What is the answer !
I take a decent quality of life, after nearly 20 years of symptoms and 14+ years of pred, the chances of getting off are minimal even though I am Actemra/tocilizumab as well. But I managed a good lifestyle and was sole carer for my husband through his final illness during Covid and all those constraints - no beds for respite care or even end-of life-care and no access to help at home either. Couldn't have done it without pred which was all that was on offer.
Both my endocrinologist, and my rheumatologist indicate that low blood sugar is common with low cortisol. In my case, even with prednison. I actually had reactive hypoglycemia before I got PMR. Need to manage this, and I do it successfully, with a high protein, higher fat and low carbohydrate diet. I eat healthy snacks between meals, mainly high protein; it’s never treated with more sugar because that will cause the insulin to spike and crash your sugar. I actually test my sugar randomly per my dr order. Despite the higher fat diet, my coronary arteries are clean. I really think it’s the carbohydrates that do people in especially the sugar- my personal opinion. I had high cholesterol before I went on this diet. My symptoms of low sugar are blurry vision, shakiness and feeling doomed. My remedies are a piece of dried fruit followed by whole milk, cheese or an egg.
I was really interested to read your post as I am having a similar experience. It seems that we are not abnormal, just different. Managing pmr for me initially was not a problem, March '19 till Jun '22. I hardly knew I had it. Since covid bivalent vaccine in Oct '22 caused a flare I ended up back on 15mg (had reached 6.5mg) as it was so awful. I had great advice from the contributors on this forum.
It has been an awful year of fatigue, zombied head, shaky, hot flushes, unable to relate, really not functioning etc. I started coming out of all that 3 mths ago but was puzzled by all the and why I am having problems getting below 9mg.
It seems the answers are here. Give in and rest, I do once a day, even drop off, but I am very active rest of day when I am fine. Also go back on dose, as advised then wait till you are feeling better and slowly try again.
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