I’m worried how bad my cognitive function has become under steroids and that it may get worse with struggling adrenal glands as I drop below 10mg. Rational part of me says it will eventually improve but I had unresolved brain fog prior before to steroids and so it could be further decline caused by something else.
This week I drove to site meeting but did not feel fully aware of my surroundings - very strange feeling. Processing information and responding to questions was more difficult but when I got home, literally could not string a sentence together. It was a cold day so perhaps that was a factor too but was able to return to work in the evening though admittedly riddled with mistakes as the norm.
Does this sound familiar to other PMR sufferers and has anything helped ?
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I had brain fog with the untreated PMR - I would read a section I had translated several times to be sure it was correct. I was lucky, it improved with pred but not immediately and it came back if I was flaring or just not on enough pred to allow a good margin.
It is certainly something that people need to be honest about - pred can also impair decision making and you have to consider if you are being fair to your employer and colleagues in attempting to continue to work in the same role. And then it also depends in what your job is.
That sounds promising - thanks PMRpro. Doctors tell me it has nothing to do with PMR and initially suspected Lupus or Sjogrens then there are the ones who think ir’s impossible for me to have PMR and so it must be Fibromyalgia ! Feel confident it is PMR however, possibly with something else but time will tell. Stopping work is simply not viable financially but have been able to make adjustments as self employed in order to cope
"Doctors tell me it has nothing to do with PMR" - what? Brain fog? Of course it does, any autoimmune disorder can do it. I sometimes wonder if they are talking about the same illness!!!!
That's reassuring DL - many thanks but begs the question if a doctors education is fit for purpose. Not one of them links it to general autoimmune condition or steroid use despite me trying lots of things with little improvement. Thank goodness for this forum which put my mind at rest (scuse the pun) when I left the front door in my underwear and the time I smeared toothpaste on my face instead of moisturiser whilst on the 50mg dose. Thankfully I can still remember and laugh about this !
I had a link from the Lupus organisation which obviously did.. I couldn’t find it when I replied yesterday. I’ll have another look and see if I can find it later….
This illness and its treatment, like others can affect one’s cognitive function. I think it is a lot more prevalent than society allows us to admit, judging by past colleagues’ battling through and whispered admissions of patients. We pretend to bounce back yet cry when it’s out of view of others so they have no idea and when it’s their turn and behave in the same way. When colleagues do say they are struggling they risk being seen as weak or a burden and somehow it is only them. I think you’ll find it is much more the norm than not. So, we all pretend so everyone thinks that it’s somehow unnatural and need to point to something that is external, anything but not our body that struggles to heal when not given the chance to do so.
Pred certainly addled my brain so such that I took myself off the road and out of my job. Prior to diagnosis I would completely forget what I was saying, so much so I couldn’t even recall the context of the reason for which the person in front of me was there. As they, in crisis themselves, were hanging on my every word I broke out in a cold sweat thinking I was losing it. I blamed Pred in that the next day after my first 60mg I was unable to function. Of course the illness itself, that flared massively over 48 hours, will have had a big role. I see the whole thing as a package including the unsustainable physical and mental state that preceded it, not just the Pred or GCA. I had the same with cancer, long Covid, short Covid, child birth and major infections, sports injuries operations….Recovering against the clock and my expectations made it all the more stressful.
With GCA my brain got better with lowering dose and sure, low adrenal function lowered the veil again. Boy, was I glad I hadn’t struggled back to work on the promise of doctors that I would be back to normal under 10mg. The down side was my nursing qualification had lapsed and that career was gone and I didn’t have the oomph to return to my cancer centre manager role. The only thing I had left was to face my demons, loss of identity, income and my badge of professionalism. My brain slowly came back over the 3 years after Pred and in remission. I didn’t know it would be back to this good, though it is not how it was exactly, I get tired. Not knowing is very hard and we hope to get answers based on other people.
If you must work, then don’t be a hero at other times and give yourself a chance to recover. However, you need to be honest with yourself as to how sustainable it will be if this is a very long game. It’s tough but full of surprises good as well as bad.
Thank you so much for your honesty and story SnazzyD. I have significantly reduced workload and adapted practices but being self employed does helps with flexbility. I do fear this is not sustainable longer term. It is thetefore reassuring to know it could ‘just’ be PMR and it’s more a queztion of when and not if it will improve
Some people do get back to doing pretty amazing things, some of us have to settle for a new version that wasn’t what we planned but is ok, and some have had to make big compromises. I suspect those who just went back to where they left off and didn’t look back aren’t on this forum. I think by the time my body decided to have GCA I had been round the block too often to bounce back, so working again is not a prospect. Try being crafty about getting in restorative times, plan ahead for the worst and live one step at a time. Brain wise I had to accept that I had to take notes and set reminders when before I had kept it all in my head. It’s on the spot stuff that’s scary as you found. At work make sure you don’t go hungry, cold or dehydrated to avoid putting any more stress on the body whenever possible.
Good advice - I've sadly learnt much of this the hard way ! Being cold might well be another factor however so thanks. I just want to be independent - enough money to get by and do the job I love and hopefully there will be a way to achieve this. I don't think going back to the way things were is ever realistic and to be honest some other good has come from the forced changes too. I'm really sorry you had to give up work and hope you've found others ways to bring some meaning into your life
As Snazzy says there are those who bounce back...but some of us don't. I found friends and family are not always a great support...especially after the first few months...I look OK so therefore there can't be anything really wrong with me. Life is a daily struggle (in terms of energy and sometimes mental focus ). I have worked throughout (fortunately all online)but it has often been very tough.
Does it get easier at lower doses? For me, the answer is definitely not...quite the opposite, because of adrenal issues. But the adrenals seem to show some sign of reawakening...and so am I. But it is slow.
This disease affects us all in so many different ways...but it doesn't kill us...readjusting is tough. Like you I just want to be financially and physically independent. That is worth fighting for.
Good luck on your PMR journey. We will persevere and come through this...even if slightly diminished.
I have begun to improve on the adrenal front, so don't think testing is necessary. What do you think? My enduring problem is pred induced muscle myopathy...that hasn't improved at all at lower doses.
How are you doing these days? Did you get back to your former self? I feel a total disconnect with the superdynamic person I have vague memories of.
Last spring I had a physiotherapist referral for my muscles and hip area. That didn’t actually occur until three months ago - phone consultation which got me to an exercise/rehab specialist. I’ve only had one appointment so far (second is due end of this week) but given an exercise program which takes account of gym visits so I can be flexible. All this may change now of course (just started GCA treatment).
Ah, muscles, these have been the longest part of my recovery of all, after losing so much bulk during high doses of Pred. Finishing Pred didn’t bring them back, but instead it has just taken time and very gentle exercises. Gym has been out of the question and still is I expect. Whilst my upper body that was previously rubbish is now pretty good, muscles in my buttocks seem to go on strike as the slightest excuse. I stopped in Aug 2020 and for the first time didn’t get payback after say, some gardening around April 2023. A big however, is Covid. I’ve had it a number of times now, three times badly (2020, 2022 & 2023) and it seems to like my muscles. So, I have no idea if improvement would have been quicker without it.
Thanks agingfeminist. It has not improved with dose lowering for me either and to be honest fear the worse is yet to come as start to drop from 10mg next week. The stiffness in my hips/shoulders had improved a bit however so confirmation for me that it is steroid induced
Oh my goodness, now it all makes some sense! Restricted driving as can't remember directions and names are sometimes a mystery to me. Try to keep it all together, thought some days I was going completely bonkers! Xx
A sat nav does help the basics though you do need to be very aware they aren't by any means infallible! I drove home from Innsbruck last Thursday and used the van's VW sat nav to see the roads, didn't need it, there really isn't a choice other than motorway or non-motorway. However - on at least 4 occasions Gladys Mark 2 was determined I should turn left or right onto non-existent "roads" to do a u-turn - usually works entrances! And once was what is often used as a diversion when there is something going on in Steinach, totally not the case last week.
Thank you - will dig out and update old one! Was trying to be a cheapskate and use free one on phone! Last time, it got quite hysterical when I was driving onto a ferry - U turn, U turn, U turn NOW !
My daughter chooses to use the google one in preference to the car one. Mine had a hissy fit when I had to u-turn for a long duration road closure in Bavaria. I stopped at a filling station to get local knowledge and waited to see how long it would take to catch up - it was a long time! I should have made a note of the motorway exit that avoided the road closure but instead I forgot and obeyed the sat nav. I only have rather old maps of anywhere - not been anywhere to need one so better look for an all Europe one for the general overview which is what I miss with sat nav. Wouldn't use google outside Italy as don't want to use the internet allowance/
Me too Poshdog - arriving at junction and for a few seconds can’t remember where to go. If traffic is busy I’ll go full circle on roubdabout and then remember. Couple of times have driven short distance in wrong direction. The steroids are really messing with my short term memory
So comforting not to be alone. I have driven along a familiar route, forgotten to take turn off, and arrived at my mother's house - I was supposed to be meeting my son from college. Xx
I have GCA not PMR. I’m also not on prednisone but TCZ. I often can’t think of the word I want to use. It’s very upsetting when I’m having a conversation and stop mid sentence because I can’t think of a certain word. I’m just not as quick as I used to be. I’m definitely much better than when I was on prednisone but I’m also on other medications so I’m not sure what it’s from.
My BP never went back to normal so I’m on 2 BP medications. I also had to go on a beta blocker because of extra heartbeats and of course high cholesterol drug due to TCZ and an antidepressant so God only knows why my brain isn’t right! 🤷🏻♀️
I’ve been scanning medication interactions too nallufl24 as on a right cocktail now which will hopefully be temporary. Otherwise it’s almost impossible to pin point unless you can stop taking them one by one to find the culprit
I have both polymyalgia and fibromyalgia and both can cause brain fog. Even before I had PMR I had one or two worrying incidents when driving. Now I'm better at knowing my limits and don't drive if my destination is more than half an hour away. At one time I regularly used to call in to Tesco on my way home from somewhere and I regularly would get ½ to ¾ of the way round and then my brain would completely go. I'd have to go straight to the checkout and, when there, I struggled with the payment. Once I had to give a treasurers report at the end of a meeting and whatever I said didn't make any sense to me let alone the people I was talking too. I can still remember their puzzled looks! These sort of things rarely happen now because I'm careful no to get into such situations
If something causes me to go a different route in the supermarket I’m snookered ! Learnt that routine stresses the brain less. I’ve never been good at speaking in meetings etc. and so always have a prompt list but seem to be inventing lots of new words as they get muddled up now !
Hi Body_bonkers. Reading your post and other replies is making me wonder about a problem I have been having. I am now 3 years into my PMR and pred journey and have had lots of symptoms I was not expecting along the way. Recently I have just not been able to find the word I need. It could be a name or a thing. I can see the person/item clearly in my head but cannot get to the name of it. My brain seems to slow down and search along different pathways not finding the word each time, however it does eventually find it but it can take a really long time. My wife has become worried by this so I was assessed by the local hospital and they have decided I have Mild Cognitive Impairment. Which could be a precursor to alzheimers or similar, which is a bit worrying.Until reading your post I would never have thought this could be a side effect of the pred, or any of the other 10 medicines I take daily.
Does anyone else have similar problems. My problems have come on slowly over the past year. I am on 10mg of pred and have been for most of this last year. I have not noticed any other problems just this name thing.
If this what people describe as brain fog?
Thank you for your post and for all the replies which have been helpful.
Sounds like brain fog to me ValleysBoy and we’re clearly not alone so hope you find some comfort in that as I do. I was aware of the steroid impact by reading the medication leaflet (nothing said by doctors though despite me expressing concern). It could be other medication or combination of so have a look. Stress and other illness can affect the brain too so hopefully it is not alzheimers. Unlike some of the other rhematological conditions, brain fog is not listed as a PMR symptom and I think perhaps it should be
I have the same problem, where sometimes I won't be able to remember someone's name but can recall their face, and even items like where they work etc... or a word same as you. Much later it will come to me. It's a bit disconcerting, but when mentioning it to others they often state that they have similar problems. I just chalked it up to aging, and this started before I was put on Pred. and am now off it and once in awhile it still happens.
Thank you Body_bonkers. I agree. Thanks to you and those who replied to your post I have plenty of reading to do. Will also check all.my other medications.
I can really sympathise with everyone who has had a perfectly good brain become something that either seems to belong to someone else or has just simply gone off on holidays without me. It's so frustrating and also worrisome, given the huge amount of Alzheimer's Disease in my family.
At the high doses of pred for GCA my brain just got foggy and "fizzy" and I couldn't concentrate on anything for even a short while. The only lasting "damage" from those higher doses (or from the GCA itself?) seem to be that my spacial judgement has been affected. I can't parallel park my car now for instance.
Now I'm well and truly down into adrenal insufficiency territory at 5.5mg there's a whole other host of cognitive issues. Lots of brain fog and fuzzy thinking on top of the exhaustion (which I think adds to cognitive difficulties). And the inability to handle even the tiniest little stress sends me off the deep end into meltdown frequently but at least my mental functioning is somewhat better now. I can do crosswords again (although occasionally words I know well just look wrong somehow). I've even tried going back to my online university studies, but although my brain can now absorb the work reasonably OK if I can do it at my own speed, the pace of delivery and pressure of assessments is pretty much beyond me now, so sadly I think I will have to give it away and perhaps explore other less stressful and pressured ways to learn new things.
So I definitely sympathise with that loss/change of mental capabilities. Just one of many losses and indignities we have to face with PMR/GCA I guess, and they take some adjusting to, that's for sure.
Thanks ubaoz - you’re so right about removing deadlines and life’s stressors. My spatial awareness is affected too and use it for work too. Really hope things improve for you
I had the spatial awareness thing with untreated PMR - I never dropped things before but lost so many mugs and glasses!!! I could park OK but driving through narrow spaces was hairy, The outside non-lorry lane on the Brenner motorway was a nightmare!
I drop things everday too but put that down to the numbness and weakness in my hands. Totally agree on narrow spaces - they make me wince ! My new car has reversing camera and alarms as a crutch support for stiff shoulders. PMR has honestly aged me 50+ years
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Brain Fog and Prednisone Reduction
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