Another question please, I am getting to know this enemy that has moved in on me.Does PMR or Prednisolone affect cognitive function?
I was never the sharpest tool in the box but over the last few weeks it's been getting silly 🥴
Cognitive function : Another question please, I am... - PMRGCAuk
Cognitive function
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DorsetLadyPMRGCAuk volunteer
Both may do -it’s very often part and parcel of an autoimmune/chronic disease -and initially Pred can make your brain a bit woolly.
Few links -
lupus.org/resources/lupus-a...
healthunlocked.com/pmrgcauk....
huffingtonpost.co.uk/entry/...
As I said in other post -Be aware but not paranoid
• in reply toDorsetLady
Yes, thanks. Woolly is a good description 🐑
We’ve all been there at some time or other…
PMRproAmbassador
Both can - brain fog can be a symptom of an autoimmune disorder and pred often soes much the same. And for some - both may have an effect. It does usually improve as the inflammation comes under control and as the dose falls.
Yes it is definitely part of it. I have difficulty with people’s names any proper nouns really. Sometimes I can be as sharp as a tack - the next day - nothing. 🙄
So happy you are here with the rest of us with wooly brains.... see, no question is a silly question.💕
• in reply toGrammy80
What a kind thing to say Grammy x
Oh yes for sure, very worrying at times!I did gind though that once i decreased my memory improved and tge crazy things I was doing decreased...quite a road we travel🫣 xx
As already said, yup, both. The fatigue from the PMR zapped my once fine brain to the point where I had to leave my fulfilling work as I could no longer think fast enough or grasp the technical stuff that I had to do. And starting pred wrecked what little ability to concentrate I had left. Though I have to say, that aspect had improved after a year on pred. I've been unable to read a book or watch a TV programme all the way through since my PMR got much worse, but I have started reading novels again for the last few months. I used to love reading, so that is one joy that I have once again. I think you might find that the brain fog a lot will improve as your dose is reduced.
Have you considered audiobooks? I had trouble concentrating on physical reading for quite a while ( but it’s improved). I switched to audio titles, fiction and non fiction and found that worked really well for me. I could play through speaker whilst in the kitchen or listen with headphones. The brain fog eases, as you say, but along with fatigue, it’s quite debilitating!
I'm OK with reading books for recreation now. I still struggle a bit with technical information, but its getting better. And I find the TV and radio difficult and people who talk too much. I just wander off and forget that I was listening to something lol. So I am not so sure that I would benefit from audio books. I've just upgraded from my ageing Nokia to my first smartarse phone and that is proving to be a bit of a trial too.
Your comment about people talking too much reminds me of myself. For the last few months, I find myself bored when at church functions, such as baby showers. It gets irritating to me when hearing others talk about their children and grandchildren. Not because I’m jealous or anything, because I have 2 great children and 4 grandchildren. I guess I’m just easily irritated now!
You're OK - so do I!!! It is the level of excellence claimed by so many ...
I also get so irritated quickly for no reason. Cranky most of the time. LOL
• in reply toOldies60
My husband is noticing this in me. We never usually bicker 🙊
Oldies60• in reply to
I usually warn my husband that I am really cranky. I'm that way right now for absolutely no reason. Thank goodness he's not home right now. 😁 I'm so tired of the pain from PMR and my lower back from my double fusion. It's probably a combination of prednisone and pain for me.
Me too! 🤣
For me, this is the norm....for now.
It took the first 12 weeks on Pred before extreme fatigue & cognitive issues kicked me in the face. Prior to that I felt like an olympic athlete.
It was a constant every day up until early spring this year.
Now it comes in waves every day without warning. At best i'm tired & have to sit. At worst I can't function.
If I have a good day and try to do normal things, the following 24-48 hrs I suffer, big time.
I get brain fog, I can't multi-task, I can't find the right words for things, I can't speak properly, I get upset & angry with it & my vision get blury.
If I go out, I can't get out of first gear, I feel like a car going up hill with a lawn mower engine in it. 😔
I then get drained & have to sit & reset....or at worst sleep.
I have had many many blood tests and other things have been ruled out.
So for me, it's a combo of the PMR symptoms & Pred.
Since last October i've tried to taper the pred to try and make things better but below 10mg the pain & stiffness comes back.
Had a flare on reduction in August. I'm now on 12mg a day.
It's this extreme fatigue & cognitive issues that have prevented me from going back to work.
I'm now coming up to a year on Pred.
I too had all those symptoms at higher doses of Pred but now that I am on 8mgs things have vastly improved. Clumsyness don’t even go there, I am always knocking things over mainly drinks and doing silly things. But things really do improve. Take care.x
I knocked things over and dropped things with PMR before pred. It improved quite a bit after I started pred!
Wish things had improved with me on Pred.
Not really getting any better since February.
The inflammation flare ups are bad enough, but when under control it's everything else that's knocked me for 6.
I have no doubt it's a combo of the Pred & the underlying disease.
It's clear from reading other posts, we all suffer similar but at different levels and time scales.
It's the not knowing when the symptoms will fade, if it will fade and when the PMR will (or if) it will burn out.
There are no guarantees from what I have read.
If you are flaring constantly you probably need to rethink your tapering and doses. Once it is under control at the start, you SHOULD be able to keepthings steady but only if you have the tapering sorted and you cleared out properly at the beginning. Too many doctors - and patients - are too desperate to get off pred and don't get things right before starting the taper and then reduce rather than taper - there is a difference.
The flares have happened four times since October 23.
On the first occasion the GP reduced from 15mg ( I was like an Olympic athlete for 4 weeks) then he reduced them down to 7.5mg (in steps, not in one go) over 8 weeks to get me back to work.
At that time I knew nothing about the disease, what the taper should have been ( slow!) and what was to come.
I thought all was well & back to normal! ( deluded based upon lack of info)
Back to work I go.
At the end of December neck & shoulder issues came back.
The GP then upped the dose to 10mg...inflammation then cleared up, but the extreme fatigue, blurred vision & feeling spaced out kicked in mid January into February.
Result? Sent home from work.
Things then went down hill rapidly. Inflammation in check but full band width of cognitive issues & extreme fatigue kicked in, with blurred vision, moon face & rashes. 😩
After significant delays in getting to see my GP again, eventualy decision made to reduce Pred to try & reduce the symptoms.
Again, it was done too quick ( still didn't know fully about the disease as no one explained including Occ health unit)
Result?.... extreme fatigue & cognitive issues still present, blurred vision improved but inflammation came back.
More blood tests & Pred increased back to 10mg
Inflammation under control...extreme fatigue & cognitive issues remained....and no progress or getting any better....then I joined this help group and all was explained!
In August we tried again to taper to help the extreme fatigue & cognitive issues...down to 8mg, inflammation returned after 6 days. ...more bloods, plasma viscosity at 1.81.
Extreme fatigue & cognitive issues still present.
Up we went again to 12mg, inflammation in check, but extreme fatigue & cognitive issues still with me and here we are today.
Nearly 12 months later.
No better than the day I was sent home by work in February.
😩
I really am not in the least surprised. Though what can be done to help I really don't know. You have been messed about badly and we know from experience that that makes things a lot worse. You have been very unlucky in having a doctor who didn't think and didn't rethink when things went wrong.
Some people do suffer badly with the cognitive issues and fatigue of autoimmune disease but you can't barge your way out of it. Some people have to take medical retirement - SnazzyD and @Kendrew amongst them I think
What has kept me from a straight jacket is the fantastic help from you all.
You have all helped me to understand what is going on, without you all I would not have a clue.
You have made me realise I can't wave a magic wand. I have to learn to live with it & hope things get better, bit by bit in time. 🙏
Thanks for being there for us all. ❤
• in reply toPMRpro
What is the difference between reducing and tapering please?
• in reply toPMRpro
What is the difference between reducing and tapering please
I suppose it is a bit nit picky but there are doctors who have made the different definition. Reducing is just starting at a high dose and getting to a lower dose in pre-determined steps and usually to zero and off the drug. Tapering is a more delicate process, often smaller steps and is what is used in a process called titration where you are looking for the lowest effective dose, the lowest dose that gives the same symptom relief as the starting dose. You find it by edging down to a dose where the symptoms just start to reappear and then immediately go back to the last good dose. Titration is a common procedure but usually it is done from a low dose to a higher dose - again seeking the lowest dose that works well. Most doctors are used to reducing pred to zero after using it in a disorder where there has been a flare but only temporarily until other medication adjustments take over management of the illness. In PMR the adjustment is of pred as it is the only option for management of the symptoms.
I’m still knocking things over after 4 years on Pred … but maybe the MTX has the same effect too. Grrh.
PMR can do it too - and that is still active in the background.
It’s all a nuisance and like having PMT again! One just has to accept it.
Knocking things over doesn’t worry me as much as the wooly brain I sometimes have with these meds like MTX and Pred. My memory used to be as sharp as a tack with dates and useful knowledge but now there’s a long pause before I remember stuff… I then remember but it’s too late! 🤣
Mine has come back but it took some work I suspect. I did hate MTX, having sorted out living with pred, it was like going backwards!
Yes MTX I find debilitating for about 2 days and my hair has thinned. I’ve bought an LED cap and using caffeine shampoo to reduce shedding. I’m in 17.5 mg and think I could reduce to 15 mg, so have emailed Rheumy. What a milarkey this illness is!
Are you on the max of folic acid?
Yes I am … 1 5 mg tablet x 6 a week.
I do wonder Pro … it’s 4 months now since I had that terrible fall causing a chronic subdural haematoma - and could it be delayed shock that caused it? The bruising is still there on cheek bones. It was horrendous.😣
I suppose it's possible - DL says health reflects in hair with a delay so who knows. With MTX my hair immediately started to fall out in little clumps of 10 or so hairs!!
Yes I’ve read it somewhere and it’s sitting in my subconscious & that DL has underpinned that thought too!
Do you find Lefluonimide better in every respect?
From my late mum actually - she trained as a hairdresser in her twenties in quite a posh salon .. and was still wielding her scissors and hairdryer in her 80s…
Lovely to hear that - bless your mum.. what a good training she had! 🥰
No, LEF scares me to death, neuropathy does not appeal and a friend with PMR has had such a song and dance with it, Worked brilliantly but then neuropathy, stopped the LEF, back to 20mg pred and struggled to reduce again. I did offer to try it when the MTX was so horrid and later I was needing more and more pred but my rheumy just went straight to Actemra because he could,
They’re all pretty nasty but necessary really aren’t they?
They use Kevzara in the US don’t they for PMR? Is it successful at putting PMR in remission or mask the inflammation like Pred? Not available here in the U.K.?
It is approved there. Don't know how much it is used. It does the same as Actemra, stops the IL-6 working but does it in a different way. It is still only a medication-induced remission. It has no effect on the actual disease process.
Thank you for that feedback on Kevzara - info that I didn’t know about. Sorry what is IL-6? Being dumb it was MTX last night hence foggy today! 😵💫
IL-6 is the name given to the cytoine, inflammatory substance, that goes wrong in PMR and GCA and causes the inflammation to develop where it shouldn't.
• in reply toWhippetygirl
Oh I'm so glad that someone else is clumsy, it's such a relief. I couldn't understand why I had become so awkward and clumsy. I've broken plates, spilled food, cut myself, burned myself, found things in the oven two days later.........the list goes on. I used to be so capable and efficient. I thought it was just ageing 🙄
I have days like that. It is linked to being over active or a flair. My brain just closes down. Very scary. That is why I can only do some consultancy work. I can’t remember words in the middle of a sentence. Can’t explain myself. Can’t think or plan or follow a movie or read articles or books. More pred. do the trick but on 15 mg I am not good company😅😅🙃
I share your nightmare. It is so hard to explain to folk.
They either look at you like you are mad or putting it on.
Going from ' normal' ( what ever that is in this day & age 🤪) to this is frightening. 😔 especially when it comes in a flash, can last a few hours or all day.
Thanks for making me realise i'm not alone. 🙏
• in reply toNaim1
😢
• in reply toNaim1
People seem to mistrust what they can't see, the 'invisible' illnesses.
Naim1• in reply to
So true.
They then make things up to meet their own agenda and feel that is the benchmark that 'you' must reach, therfore if you don't comply you mist be telling a lie and not as bad as you make out.
It is very very draining.
Also with PMR it 'should' go away, but it is a complete lottery from what I have learnt.
It could be next month, next year, in 2 years, 4, 5,6 or... NEVER!
The word ' temporary' is very very misleading.
• in reply toNaim1
Going back to your first paragraph Naim1, when I was applying for my PIP I had a DWP assessor come to my house. When I was turned down and had to go to appeal I asked for a copy of the assessor's report. I had been rejected because I was 'seen to be able to peel and eat a banana unaided'!!! It went to appeal but was thrown out for the ridiculousness of it. I did wonder what became of the assessor.
Naim1• in reply to
Just bonkers.
I have read many accounts of folk trying to claim for PIP.
For most, it seems impossible and your account & outcome is common.
The powers that be say one thing & but do another.
We have to realise, for the best part, folks welfare and needs are not their primary concern.
It's saving money!
• in reply toNaim1
I apologise for not making myself clear. It was the appeal that was thrown out due to the assessor's poor observations, not my claim. I was awarded PIP indefinitely.
I realised what you meant, I'd have been OK, I can't peel a banana without a lot of effort or a sharp knife!!! But what sort of brain thinks that sort of comment on an assessment is acceptable??
• in reply toPMRpro
Neither can I now, due to osteoarthritis in my hands 🍌Back then a friend told me that bonuses were given to assessors for failed applications. I don't know if that was true.
Naim1• in reply to
No that's ok, I understand.
It's the intial assessment to which I was refering.
How many have similar initial assessments but do not have the strength of character to challenge the decision?
You may find the individual was probably promoted for using their ' initiative' to save money! 🤪
I'm a GCA-er, not PMR, but have been on prednisone just over five years now. Do you think it would help if you tried to taper slower? Kind of give yourself a break....considering that pred is our best tool, going slower may help.💞
Many thanks for the reply.
I think that will now be the plan for sure.
Seeimg my GP next week ( if I can get an appt!) to discuss my last blood test results & then I think we have reached the point where we can say it's as good as it gets for now.
Will then discuss a slow slow taper from 12mg back down to 10mg ( which worked for the inflammation)
As for the fatigue & cognitive issues, I have not a clue what will happen.
i've gone from full active normal life with no cognitive issues ( yes a bit tired like everyone) to hardly being able to compute how to make a cup of tea and sleeping during the day. 😩
• in reply toNaim1
🫂
Hi Grammy80. I too am a GCAer, and just completing my 3rd year on pred. Started on 40mg, 2 re-starts after jabs/ flares...now on 3.75, clumsy and forgetful...put my underwear in the bin instead of the laundry basket this morning..ho hum. Maybe we should form a sub group ...there could be so many sub groups on here. 😉🥰
Where would we be without this forum? Don't want to even think of that. I hope you are doing well at 3.75!! I'm on 60 again, don't go by my case, and doing crazier things than getting rid of good underwear. I've been a Depends Queen for a while, so the bin it is. I'll be putting up an update today now that I'm on.....but yes, let us keep each other UP~!!!💪🏼💪🏼..rememer, laundry.💞
The other problem with Pred is irritability. I was SO grouchy for a couple of weeks, snapping at everybody. That faded after a while. It's an unpleasant syndrome but important that you learn to accept it and let your body (and mind) heal at its own speed.
• in reply toChrisBeeLoop
Thanks, I think I am trying to fight it. I was diagnosed with chronic fatigue syndrome in 2004 and had to give up work in 2006. I was taught pacing with the chronic illness physio. I never got the hang of it, I wish I had but I was brought up to shut up and put up.Feel like crying just now, so tired. This was a mistake, I'll know next time.
Then have a cry - let the disappointment out. And maybe someone will provide a nice cuddle?
Grammy80• in reply to
I was brought up the same way!! Time and psychology have taught us that the old way was not necessarily the right way. Stating a fact is not complaining~! It is also healthier for us to share our emotions or cry than to keep everything bottled up inside. Not easy to do, I understand, but necessary. The old way isn't the healthiest way....💞
Or as a past counsellor said to me once, the coping mechanisms that we develop to survive childhood are not always useful to us as an adult. There is never any shame in seeking help and support. It is better in the long term, than being miserable on your own.
I'm the same!.....I get so frustrated, then later I feel ashamed for losing it.
I've found that keeping out the way & being in my own company helps...that way no one can p**s me off!
Not healthy, but being alone to reset once in a while helps.
As a wise man on tv once said..." Don't react, respond!"....which is easier said than done. 😔
You can only hold so much inside....shake up a bottle of soda with the cap on....and when it pops...POW! I do value my alone time but I also need to interact with people. Are there folks you could call to just say Hi, How are you....thinking of someone else, often helps us to stop focusing on negatives. If all else fails, pound a pillow!!!💞
That is so true and important for us to say...it is the pred. Yesterday rated just a three....I went from fine! "I'm going to accomplish something." then a wave of fatigue, unhappiness and a grouch.....I crawled off and listened to another book, Alone. It is the pred and we have tomorrow. Thanks Chris💞
Sure does. My main problem is numbers. I just set myself a test 12+17. First answer 31. But then I "know" something is not right. So I break it down 17 +10+2 that's 29 right? This time I'm pretty sure after typing it. That's how it goes, check, check and check again.
Personally, I'm convinced any condition or medicine that can bring on chronic fatigue can also bring on 'brain fog'. That's why 'brain fog' is a poor symptom to use for diagnosis.
Without shadow of doubt LittleJane - there was a study done last year which demonstrated 71% were cognitively impaired. So many of us suffering and the medical establishment needs to wake up. I'm very scared - it's not just PMR but the steroids and stuttering adrenal function which are progressively making it worse
....to say nothing of the unknown factors and our loss of control. In my humble opinion, being a part of this forum is so valuable because we are all educated and supported along the way. When we 'speak' with others who have walked the walk...it takes away some of the unknown, we are not alone plus we become more educated about our disease. We can talk of what is hapening and find out certain symptoms are part of the disease, nothing to be alarmed about. For me, listening to those before me, it took away much of the fear that I didn't know 'what was going to happen.' Others shared their experiences and were farther toward wellness, it gave me hope.💞
• in reply toGrammy80
Thank you Grammy ☺️
As an adult who was diagnosed on the autistic spectrum two years ago (ought to have been picked up at school but wasn't in those days) it is the 'unknown' of anything and lack of control that is so scary (and why I really need to know) I see it in my grandson who is also autistic. He goes through agonies when an unknown event is looming (and usually ends up enjoying it).
Yes, absolutely! My daughter (24) will even defend me "give mom a break, she isn't thinking great yet." Mine is particularly bad in the morning. It's like I need my meds and then I need to get warmed up. Although, sometimes, I just can't get it going much at all. I've always been sharp. I do think either the PMR or Pred has exacerbated my ADHD too. I have to really work hard to stay focused and keep my brain together. Ugh...down to 6mg tho, so hopefully things will get better. Been two long years of dancing with this disease. Hang in there and give yourself grace!!
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