Seriously, is forgetfulness and confusion part of the package of PMR/ Pred? I think at least a third of my brain cells have gone walkabout 🥴I made the cakes for the weekend and forgot to put the egg in 😶
I went to start preparing our meal and found I had forgotten to order two items in my shopping this week. Not only that I had ordered something I didn't even want 😧
This isn't funny 🤔 I used to be able to juggle several balls not so long ago, now I don't seem to be able to hold onto one ball without dropping it 🙁
Written by
Groggrim
To view profiles and participate in discussions please or .
Brain fog is a common effect of most autoimmune disorders and for some people can be a side effect of pred - and while some don't suffer too badly, some get a double whammy. I can remember reading and re-reading a page and still not having a clue what it said.
Had you forgotten or was it a swap? I've never done online shopping, doesn't exist here, but I hear a lot of complaints about inappropriate swaps.
Thanks for the reassurance. My maternal aunt was diagnosed with Alzheimer's at 58 and died at 62. It played on mum's mind and also on my cousin's. You do wonder if these things can be passed on
The timing for me couldn’t have been worse! I’m taking an undergraduate certificate course and trying to write essays having not been to university in 43 years!
Good thing I have time on my hands. I really admire young people who can write an essay in a week. Mine take me 2 months of reading, re-reading, getting distracted every 5 minutes and completely forgetting what I read! Don’t get me started on trying to construct a sensible sentence.
My older daughter is training as a nurse endoscopist - that involves a uni course at Masters level, the younger one is a paramedic and has done 2 such course since her mid 30s. The nurse one just finished the Independent Prescriber module - dear lord, I couldn't even THINK of that level of essay, I just get the job of removing words for all of them!!! I can construct a sensible sentence - one at a time, Can't stick them together in a lmited number of words though!!! They were born when you were at Uni - and believe me, they struggle!!!! The nurse one does have ADHD as a handicap though!!!
Oh my gosh! This is the first I heard that ‘swap’ is a thing. This happened to me in the beginning of my PMR. It drove me crazy. Grabbing for something on the left when I really wanted the item on the right. Picking up pepper instead of the salt. it was one of the complaints I brought to my doctor visit but no comment.
This did calm down. I wasn’t sure if the PMR caused it or the steroids.
Wasn't really what I mean though yes, spatial problems were real enough. I would go to put something down and miss the table! A lot of stuff ended up on the floor!!!!
What I mean was when you order a product from a supermarket and the packer chooses a replacement - which are sometimes so bizarre you have to wonder what they were on at the time!!
It can be due to Pred and PMR and also when your adrenal glands are struggling to make up for a low dose of Pred. Also, over doing it or stress. Take your pick. Annoying isn’t it?
One of my favourite fruit cakes as a child was a boiled eggless fruit cake - used vinegar I think. And my daughter makes perfectly respectable vegan cakes.
my “corner shop” is Waitrose and I went to get a few bits this morning which I scanned and popped in my bag. Got some cash from the machine and as there were people waiting behind me went to the side behind the tills to take my glasses off and put my money away. Then just kept walking on and out the door. Didn’t even notice the scanner was still in the trolly when I put it back. I was home and hunting for the receipt in my bag before I finally realised I hadn’t checked out and paid. 😱 Worrying but not sure I can blame it on my illness though. They were very nice about it when I rang to explain.
yes they said I could do so when I next go in as my Mywaitrose card will be blocked but it’s less than 5 mins walk so after a little rest I went back and cleared it. How embarrassing!
Its all true. It happens. I find things in the fridge I never intended to be there . To me its about being so distracted because of the meds. And some days worse than others. I keep "stickies" and pen available always. Notes and lists are an invaluable help. But you must remember to make them!! I gues s you could say I put my mind on paper. Don't worry to much about it, ly makes it worse. RELIEF of PAIN is worth it! Pain is an even bigger distraction than the confusion from the meds. Remember laugh some when you can, you will feel better haha. God Bless. 😂💡
I have been misunderstanding sentences I read and having to recheck. Never happened before, dont know if its pmr or not. Also completely forgetting things that I know perfectly well.
Just to add another tale of potential pred/PMR absent mindedness....Some time ago, I ordered up my weekly Tesco home delivery items, and was considerably surprised to see I'd ordered, not the 10 bananas I wanted, but 10 KILOS of bananas! That could easily be dismissed as a typing error on my part, but not so much the 5 packets of nappies that also were delivered. I know I'm not that young anymore, but even I am not quite in need of nappies just yet! I've no idea how I came to order those!! 🤭 Never happened before prednisolone!
I'm noticeably more forgetful, absent minded and easily confused. I don't worry about it any more. I just laugh about it when it happens.
well, that cheered me up no end. A bit like being back in lockdown, how many banana breads have you made , then?? And you may need the nappies in the future lol
😄 Haha! Well, the Tesco delivery man suspected it was a mistake but brought them 'just in case'. He was happy to take some of them back to the store. As for the nappies, they definitely werent my size!.... but actually came in very useful for a neighbour with a baby, so all good.
😂😂😂 Well, that made me laugh!! It's very reassuring though to know that I haven't made up "steroid brain" which is my excuse when I can't remember something or when I do something daft!! So good to know we're not really losing it, it's not our fault, and it may even reverse as steroids reduce and PMR wanes (hopefully!!!) 🤞
I find my words don't come as quickly when Iam stressed.Its like Iam playing charades with my family to guess the word I want to say.Rather frustrating though!!!
I was still on a low dose of Pred in the month before COVID hit , so I had the brain fog of adrenal Insufficiency but my other conditions cause this as well.I remember for once my brain fog payed dividends.
I had forgotten while ordering my shopping on three separate weeks that I'd already bought toilet rolls and so I'd ended up with three giant packets.
My family were laughing at me until COVID arrived and caused a toilet roll shortage.
I must have been the only person in the UK who didn't need to worry about going to the loo during lockdown.
You are not alone. I paid £450 quid gas bill supposed to send to British Gas - sent it to BT by mistake! Don't even have an account with BT! Now have the hassle of trying to get it back 😔
Quickest way is to contact bank and cancel cheque - or has it been paid in… and what was written in as payee? BG or BT. If name isn’t correct, then bank shouldn’t action transfer of funds into account…
Thanks - I think I've sorted it, they're refunding by cheque - course it's in husbands name made it more difficult as they had to speak to him and he can't hear! What a fiasco all my fault
Sounds about right- but it’s all data protection -had same issue with my late hubby and Sky - not helped by a lady with a very broad Scottish accent -apology to all Scots! 😳
Hope it’s sorted now - not an insignificant amount..
Scots were/are no problem in this house!! Had a Yorkshire accent that was incomprehensible even to me once. I used to manage by a one-sentence conversation on his part: "This is my wife and I authorise her to answer all the rest ..."
The thought of a £450 gas bill is giving me the vapours! That would probably be 2 years worth of gas for me - heating and hot water only though. Cooking is all electric.
I know - we got a new boiler last year after the 40 year old one gave up but so far it's cost a bomb. Partly because the old one needed turning on manually and half the time I never bothered. I'm sure cold is better for you. OH has got used to it warm but I hate it. I sneak and turn it off and down when he's not looking
Like me - I put a pulli on/get a blanket if I am cold. He, like his mother, turned up the thermostat! When he was ill I made him stay in his room which I couldn't go into without stripping off - he wouldn't come into the living woom as it was too cold. His was like a sauna!
Luckily my daughter with whom I will live eventually is like me though I draw the line at wearing a fleece dressing gown on top of day clothes! I will leave for the UK next week - and will switch off the heating as I leave and it probably won't go back on until the middle of October at the earliest. Even so, it is only on 7-10 in the morning and 6-10 in the evening and only the underfloor heating in bathrooms and a strip in the hall and in front of the kitchen block - no radiators at all now.
Just read a horrific article in the Guardian about how gas cookers are worse for you than standing in the middle of a busy road so may need to think about electric cooker myself as we spend a lot of time in the kitchen
One is left to worry about EVERYTHING these days!! Our gas boiler is about to be switched to district bio-heating provided by a small local company. Not sure what they burn - could be bio-gas from the local farmers' slurry, will find out on Monday night. The burner needs replacing, kept cutting out so it is being ditched.
I keep getting money taken out of my business due to British Gas, et al crooks, but more like £1000's than £100's and my brain just wont get into gear when I try and complain and reach a resolution.
Thank you, I know that's what I need to do - exactly, don't let the buggers get away with it!!
I'm making priority lists, physical ones and "in my head" ones! Very grateful that this group really understands, in a way maybe I've found my tribe?
My family just say "oh, it's just mum", and I've felt so isolated at times as I don't want to come across as whiny. I've always been a bit on the "dippy" side, and prone to depression, so it's just a case of 'mum's turning into one of those "old" people, complete with Sunday to Saturday medication box!!
But I won't let it get me down, I'm grateful I'm not in pain, off to have a go at "street dance" next week!
My friends, who have not got PMR, share many tales like this. They say it’s age related. It’s easy to blame PMR for it, but could just be normal age related….brain cells die daily…happens to all, not just PMR sufferers…
My position…I suffer from Polymyalgia, Osteoarthritis in hands, hips & feet, Trochanteric bursitis on left side Sciatica on right side, Fibromyalgia, Familial high cholesterol, Asthma, Hypertension, Hypermobility, Essential tremor, Orthostatic hypotension, Coccydinia, Haemangioma, spinal, & Macular degeneration. I’m currently on crutches, after a bad fall & a knee injury, it’s been 9 weeks, & I cannot walk without acute pain. I fall a lot. I’ve suffered brain issues for 12 years, since getting fibromyalgia. It’s a well known side effect of the disease, not any drugs, & is with you for life. There’s no remission as there is for PMR (mind you, I’ve had that for 5 years now). People who know me are used to it, & don’t expect a full sentence without a word missing in it. So I understand the situation well. I just wanted to put forward the point that some people without PMR are suffering these items just because they are ageing! That’s all.
I can definitely say that prednisolone affects my brain. I have to read and re- read articles, can’t summarise what I just heard on the radio as I lose track in mid-sentence and cannot remember what I was going to say because my brain feels suddenly empty. And it’s worse on higher dosage and when I am tired and then again I have days when concentration is overall quite good. So I hope this too will get better on lower dosages, back on 40 mg again🙄and eventually pass. It’s reassuring to read that quite a few of us struggle - one is in good company😊
Was glad to read all your stories above as I can't remember words when speaking at times and I notice that concerned look of friends when it happens. I tell them it is a side effect of Pred.
However I am thinking that if it gets worse I can ask for a brain scan for signs of dementia. In that way if anything shows up, there will be time to get decluttered and organised in an orderly way. The more we chat and try and keep our fluency flowing the better it is apparently. Alexa and google also comes to my aid quite often!
For now I assume it is the Pred and soldier on, ever hopeful that the PMR may burn out now it's in its third year!
I think we were separated at birth!! I relate so much to this - especially the "empty head"! At a meeting with my accountant I couldn't process one word and almost left in tears. Luckily my partner's mother tongue is maths and finance, so he saved the day!
I am sorry you are suffering but thank you for posting this as it reminded me that my recent increase in dose could explain a couple of idiotic things I did earlier this week. Worst was leaving my mobile phone sitting at the self checkout in Morrisons! Luckily for me an honest lady was there behind me to return it! It was only a small shop too - so no excuse of being overwhelmed with packing it! Good luck.
I feel for you, Pippah!! I've had panic attacks in supermarkets for years but worse recently, more like an "out of body" experience, but I won't give in and order online - I've no doubt lost the odd tenner, too!!But mine have got worse after a decrease in dose, so I'm confused, maybe it's not related, after all?
I think there could be a u-shaped relationship - high and low doses of pred are associated with problems of various sorts but there is a sweet spot somewhere.
Why would ordering online be seen as giving in? 🤔 We have ordered online for some years now and never think of it as giving in. Why trudge round a crowded supermarket risking covid and other things when you can unpack in the comfort and peace of your own home.
Morning Live on BBC 1 has just discussed the very subject of Brain fog, well worth watching on IPlayer. Brian inflammation is part of the inflammatory condition and there were suggestions and recommendations for improving neurological performance. Lots of interesting tips, like cooking pasta with a green tea bag to get polyphenols into your diet!
I had the brain fog from the PMR, but since I have been on pred, it's like my brain does a quick time out, a bit like your PC crashing when you get those micro power cuts, and then it's like I have to wait for my brain to reboot. Can't describe it any other way. I forget what I am doing in the middle of actually doing it some times, and I have to try and remember what is in front of me and why. I suppose, something to do with the amygdala in the brain firing off and momentarily closing the frontal cortex, like when the fight or fright response cuts in. Certainly, I have an enhanced startle reflex on pred. And zero concentration for reading too. As someone else said, it's damned annoying. I feel like my once fine brain, that I was so proud of, turned to scrambled egg.
Me too - a problem when mixing with the average senior here who is hard of hearing. The Seniors Club and aquafit I go to can be excruciating as my hearing is rather above average and I too jump at loud noises!! But it has been part of my PMR right from the start. It physically hurts.
My husband got very stroppy when we attended his department's Christmas do - a group booking at a local hotel that catered for such things. Dinner wasn't over when the band set up just behind where we were sitting and actually started playing very loudly. I ate my dessert with great difficulty - needed my fingers in my ears for comfort - and retreated to a sofa in the hall outside for the majority of the evening! Not really a good look for the boss's wife! Then my daughter's wedding was a repeat - the band didn't respond to polite requests to turn it down a bit and so almost no-one was dancing and most of us found seating in other areas. As MOTB I couldn't retreat to my room!!!
The exact same thing happened at my daughter’s wedding! Very frustrating when lots of relatives and friends who you haven’t seen for ages can’t hear themselves speak 🤷♀️
I put the startle reflex down to the pred. I'm very sensitive to loud or high pitched noise too. Smart phones beeping, buzzing and whizzing make me want to scream.
Gimme some of what you've got, Gimme! Your brain is in fine fettle, you've described it all so succinctly. And eggs scrambled might not be omelette "a la whatever" or soufflé, but they're still eggs, and still very tasty!
I had never related the startle reflex to PMR? But now someone else says it mine is really sensitive. It's not as if people sneak up on me or I can't hear them. Its like I'm on another plane of existence.
you have reminded me that my terrible memory and lack of concentration is not because I'm getting senile but because even though I'm on a relatively low dose of pred, and my osteoarthritis seems to have taken over in the painfullness department, I still havhave PMR, and can blame that for being so tired all the time and making stupid mistakes, and I really shouldn't keep telling myself off when I do something spectacularly stupid. I I identify with what you said about family jumping in to correct you by filling in the word you were trying to remember. I have been telling myself I getting dementia, and worrying about it, but of course it's the PMR and the steroids. Among all the other things I forget every day, I've forgotten that!
Thank you, I feel so much better...It's not me, it's the illness, and the medicine, not me.
I'm glad you feel a bit better Pris80. It's so depressing to feel debilitated day after day and not knowing why. I felt horrible yesterday, today I feel better. It's very up and down but after a down there is usually an up. Have a good day. I'm off for the weekend now x
thank you so much for your post. So my "senior" moments are not actually that!! No wonder Im struggling to run my own business and can't make decisions any more! Then worry Im a total idiot.
Thank you for your humour and your matter-of-fact way of describing your condition, its cheered me up no end - I have to read a book or watch a TV programme at least twice to remember the slightest thing!
What a weird club we belong to, but as long as we can help each other along the way long may it continue.....great!!
When I was first on prednisone my mother was in her 90's. We use to joke that between her brain and mine we made up a normal brain.I would put stickies on by dashboard to remind me to go somewhere as well as my mom and we'd laugh when we got home and forgot.
I use to correct PhD papers and I couldn't string a sentence or spit out a word in my brain.
I don’t have PMR and am not on pred but do have a chronic AI disease of rheumatoid type. Brain fog has always been an issue though and got worse with menopause…… just trying to remember what to do next… ah yes! Press reply 😉
I've been doing silly things ever since I started on Pred. However, it does improve a bit on slightly lower doses, and long term, I think my ability to learn is as good as it was before so I'm not unduly worried.
Hi Groggrim, I can definitely identify with what you're experiencing and I'm pleased I'm not the only one! I'm finding it particularly difficult remembering the names of things and people at the moment and it's so annoying. My OH looks slightly worried when I do this. On the other hand I have no problems with remembering chores that have to be done on a regular basis. I've always written lists of things to do and this does help.....good luck
This has all been so very interesting for me, I was diagnosed with progressive chronic white matter ischaemia two years ago but am doing ok. Keeping blood pressure, cholesterol and below pre diabetic I am hoping I’ll be ok. I have been on low steroids for fifteen years and will remain on them. I can do the tests ok so hoping some of my problems are just old age. Just trying to bake a cake for sons 55 birthday. No flour only almonds eggs and sugar. Wish me luck and take care everyone. 💐
You are not losing your mind!!! I was a second level exec in a Fortune 500 company; multi-tasking and had my own secretary......enter lots of pred.....I would lose days...couldn't always handle just one!! task...I felt like the village idiot....but it is not permanent. Sometimes it reminded me of much younger days when I had too much of the grape 🍷🍷💞
Better for sure and if I have an off day.....I go with the flow and don't do much. Breathing is easier, sleep getting better----now I just have to wait for spring and build up a little strength. In the meantime, I'll paint and listen to books...lazier indoor activities. Thanks for asking...take care💞
Ditto many of these symptoms, emotions all over also, I equate it to being under the influence of alcohol, I find it can be annoying. I lost £10.00 in Sainsbury’s last week god knows what happened it.🤦🏼
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.
Where am I................
What to do? I am exhausted!
I am still here my friends x
Am I imagining this?
