Am at present on 6mg Pred reducing really slowly DSNS and ready to drop to 5.5mg. The fatigue I am struggling with is almost overwhelming. I can get up and have breakfast and find it really difficult to move on with my day. The least bit of exertion and I feel the need to sit down. My best time of the day seems to be mid afternoon when I can probably potter in the garden etc but I cant get used to being so tired and lifeless. Will my energy return at some point once my adrenals start to work a bit better? With such a slow reduction it will be a long time? cant imagine spending the rest of my life like this. It affects everything - from my social life to feelings of guilt that I am letting housework slip so adding all this to the mix doesn’t help.
So much fatigue: Am at present on 6mg Pred... - PMRGCAuk
So much fatigue
Yor energy will return, but unfortunately no one can tell you when exactly... some suffer a lot more than others, SnazzyD being one of those. Sure she'll be along shortly to give you her tips for dealing with it.
But really it just VERY slow taper, tiny drops down, resting when you need, time -- and patience, a lot of patience.. 🌸
One thing I never feel guilty about is housework! I am feeling a bit guilty about the stuff cleared from my old car and the remnants of being away last week that are sitting about though!
How long is a piece of string? Sorry to be so unhelpful
Yes, it can hit hard when one has ready battled with Pred side effects on higher doses only to find on low doses you feel debatably worse. Some struggle more than others but your experience is not unusual and certainly describes mine. I was having to have a solid 1-2 hour sleep in the afternoons again and couldn’t get up in the mornings, my normal best time. It can take months and months to feel normal but I found some drops were easier than others and it started to ease once I got to 5mg and under. The worst was under 8mg to 5mg. The only way to get through it is to go with it because being low in cortisol is the only way your brain will get the message to tell the adrenal glands to work.
I do recall thinking, “well, this is my life now, a life in isolation, boredom and swinging emotions”. It does get better but guilt won’t get you through it. If you do too much you feel worse and risk an adrenal crisis which you can tell your relatives and friends. I had to introduce reductions of 0.5mg over anything from 6-14 weeks. If you ever start to get diarrhoea, vomiting and extreme weakness seek medical help quickly. Also, if you haven’t already done so, look in the FAQ’s under A for adrenals.
Thank you for your replies. I am prepared to be patient if it will get me to the right place eventually. I just didnt realise how very difficult this period could be. My body just seems to be giving up on me. Hope like Snazzy once I get below 5mg things might ease a bit . Taken me 4 years so far so another year maybe…….🙏
The Deathly Fatigue strikes again! Pretty horrendous, I just gave into it!
I'm right there with you. On 6.5 mg and starting to feel extreme fatigue and nausea. It comes and goes, dependent on my activity and stress.
It's good to hear from Snazzy and others here that we are not alone, that it is possible to get through this.
Hi JayceeIF You're feeling so much fatigue I don't know that it would be good to decrease.I got down to 3.5 -4mg and was feeling extremely rotten.I had some medical stuff happening so I went up to 10mg for a few days.I have reduced back to 5mg at present and I feel soo much better.I will continue to reduce slowly but I'm thinking that my happy level may be 5 for a bit.I tried for months to go to 3.5 and the Tiredness and side effects were awful.I am having an urgent operation next week for my steroid induced cataracts and stents for glaucoma so I don't want any prednisolone induced anxiety right now.
Hello Jaycee, even though none of us can give you any actual help, I think it does help enormously to know that what we're going through is absolutely normal. I am on 7 mgs, reluctant to try the next half mg drop and couldn't feel any worse! Zero energy except sometimes a bit in the mornings when I try to get out in the garden which rejuvenates me . But after 5 or 10 minutes gentle pottering it's back on the bed. If I was a sit around all day person it would be okay but I like to be up and doing! This week has been especially hard with the daughter of one of my best friends killed in a car crash. Thank God for a wonderful husband, supportive family, music and books! Wishing you all the best Jaycee. Here's to all of us battling the dreaded Deathly Fatigue .
Thank you.. I am not a sit around person so I am feeling it really badly. I want to continue to taper very slowly and will continue to do so whilst Im not getting any PMR pain. Trouble is I believe adrenal insufficiency can in itself cause muscle pain and I am also on statins which can have the same effect so it’s sometimes difficult to know exactly what’s happening. Pretty sure though that any discomfort I am feeling is not PMR related. My PMR pain has always been in specific areas and had always had a ‘burning’ pain quality. It’s all a bit confusing but I think Im on track. Just trying to take things very very slowly.
I am in the same boat with you, feeling so proud of myself to have tapered to 5mg after almost 7 years of PMR. But also feeling absolutely terrible, with huge pain in my hands, nausea and barely the energy to think let alone move. After a few weeks I upped my dose to 6mg, expecting grief from my GP, but he said anything under 7.5 mg is considered less harmful and that 6mg was okay, to take it very steady from there. It was a relief I can tell you, certainly took the pressure off me and made me feel less of a failure!
I feel the same. On 2mg, reducing yo 1.5. House is dust covered. I removed 30 spiders from the lounge. My worst part of the day is after I’m up, bathed & downstairs.mI just want to sit down!! But if I force through, I find a good patch late morning, early afternoon, & then hit a wall about 4-5pm. When I went on holiday I increased to 5mg so we could both enjoy it, and because I was driving round Italy. We rested every other day. I dropped from 5mg back to 3mg, quick-ish to 2mg, & stayed there for 2 weeks. Nausea each morning. But it’s worth it if I can get off, & if PMR is in remission!!!!!
Hi, I’m on 7, and feeling exactly the same, struggle to waken, and sleeping 1/2 hours every afternoon.
I’m going to Thailand in four weeks, have been on 7 for eight weeks, but I’m thinking I’ll stay that way, until I get back.
It’s going to be a relaxing holiday, so 🤞I won’t have a flare
Yes - but getting there isn't all that relaxiing!!!! And even good things can be stressful when they are going on - take plenty of pred with you, just in case.
Yes, thank you
I'm like you, Jaycee, holding at 6mg pred for a while before trying to drop to 5.5mg. I, too. struggle with pain on waking and I have only just risen (1030am). My best time is late afternoon but five minutes pottering in the garden leaves me totally exhausted,
So, what to do? I now do things that don't exhaust me. I use the computer to print some of my photgraphs, I'm writing my life story which will bore the pants off my grandchildren and I have taken up drawing and painting. These activities require little muscular effort but I have to remember to get up and walk around frequently to keep my legs going.
I no longer dust rooms because I don't notice the dust (a doubtful benefit of fuzzy eyesight which seems to accompany Pred). Ruby Wax once famously said ' you can spend an hour dusting the furniture only to find you have to do it all again a year later'.
I used to be a proud gardener so I'm delighted to have a young lady gardener come round fortnightly.
I have done what I can to protect myself from falls due to 'wobbly legs'. I have a Blue Badge, a Blue card, a stairlift and a mobility scooter. I have revised my will and have LPAs for health and wealth (not that there's much wealth but at nearly 90 I don't need a lot).
Having done all that puts me in a much calmer state of mind.
Lastly, I try to achieve one task, however small, each day so I can go to bed reflecting on having done something useful.
My very best wishes to you. Onwards and downwards!
Thanks so much. I knew I wasn’t alone with all this but just helps to reinforce that knowledge … I can now look at the dust and not worry so much. Think I’ll wait till its thick enough to roll up then it will make life easier 🤪
Oh good one Jaycee! Here's to rolling up the dust.......
While there is the fatigue others here have mentioned, I also was hit by fatigue when down to 4mg pred, then, for other reasons, had my iron (ferritin) level tested. It was very low so started taking ferrous sulphate, and within a week the fatigue had gone.
I remember "conking out" some mornings and every afternoon when tapering. I was so exhausted some days I just sat and slept. But there is hope. I do not get nearly so tired now. But I think my PMR is back so we'll see but most likely I'll be back on steroids. I am not sure when is the best time for you but I had a Synacthen test last year which checked if my adrenals were working. I had not heard of it. Something to ask your doc about. Whatever you do, don't feel guilty.
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