I cannot find anything about this and wondered if anyone had experienced any diminution in their cognitive abilities. If so is it due to the PMR or the pred?
I’m struggling to keep on top of a lot of fairly small things. I’m more forgetful and generally taking a lot longer to think things through.
I certainly feel this is an issue for me and it’s really getting to me .. not sure if it’s the Pred, my age (51) hormones or a mix but whatever it’s driving me up the wall, I forget names of things, lose my train of thought in middle of speaking, mind blocks etc etc., I’m really hoping that as my dose lowers my brain will return!! Not any help to you sorry but I feel your pain!
This is a common symptom that has prompted a number of threads over the years. Sometimes we refer to it as “Pred Head”. In me it is a forgetfulness of proper names for people, places, films, songs etc. Fortunately my husband of 31 years is a useful annex to my brain and can fill in the gaps.
When I was acutely ill with PMR, I was troubled by a foggy head, it was difficult to follow the thread of my own thoughts and convey information to others. This was stressful as I didn’t understand what was going on and blamed myself. Stress made this worse. It made doing my job quite difficult at times and was a big factor in my quitting in the end. This has improved with PMR treatment and the fact that I am no longer under pressure.
Interesting that you mention that you quit your job .. I have been off work since October and I just can’t imagine going back to my job, I feel a completely different person now and don’t know how I would function with my ‘brain fog’ and so many other symptoms/side effects. The job was extremely busy, challenging and stressful and resigning from it has crossed my mind but it’s a scary prospect.
I believe there is a cognitive element to this disorder. In my early years, I had trouble getting Organized and then staying focused. I could go to the market, and find myself getting lost. After a few minutes, I would collect my wits, tighten my focus, to get finished with the task at hand.
Any time I was under stress, or feeling anxious, my "pred head" would be worse. It took me a while to figure out that this disorder has physical, emotional, mental, and cognitive elements.
Learning to be patient with yourself, and sharing your challenges with family and friends, helps this learning period go more easily.
This forum is your best information resource, bar none. In fact, I believe some of the folks who contribute here are actually the ones who write the books.
Ask questions, trust you will get answers which are carefully reviewed for accuracy, and have no fear of the "dumb question". The learning curve is steep..
Also, someone is here 24-7, which gives you someone to communicate with, in the wee hours of sleep-less nights.
My cognitive issues have resolved themselves, I'm not "just getting old".
PMR does interfere. Someone else said...it's not life threatening, but it is life changing...
Believe it!
Stay safe in this Covid time,
Kind regards, Jerri
PMR diagnosed 2013.
I'm so glad you raised this topic. I have been experiencing exactly those symptoms for some days now and yesterday evening was beginning to feel that this was a something I should check out. Your post has triggered me to think about it in a more focussed way.
When I get a new 'symptom' I ask myself what could have caused it - and because of PMR, if the answer is not - 'it was something I ate', or some unusual physical activity I have been involved it, the first question is - am I stressed about something new?
Having read your post - I immediately asked myself that question and hey presto -
I have been in a situation over the last week and a half, that has caused me more stress than I have felt for a long time. The situation has been one where the ability to say the wrong thing has been an ever-present risk and staying silent can also be the wrong thing. I think my poor brain is suffering from the strain of feeling it has to 'watch every word' and occasionally takes fright, or just gets weary and takes a momentary break.
So now I have decided not to WORRY about this symptom - because that will only make the situation worse. - I think I have identified the sources of the stress - and will take steps to dispel it - by sharing the 'burden', finding something I can do about what is causing me concern - and if there is nothing, letting it go. And then I'll see if the symptom is relieved. If it isn't, I'll take a smidge more Pred and see if that helps.
If it doesn't, I'll take a look at my diet and the advice on-line about nutrition for older people...... and go from there.
Thank you again for the nudge.
Without a doubt. Could be either. Not sure what to ‘blame’ but prior to GCA diagnosis I kept getting dropouts in conversation with either words or total loss of the thread. I also became rubbish at Scrabble, I was distraught. High dose Pred just scrambled everything but as the dose came down my Scrabble game picked up but I was still not all there. I noticed a distinct improvement under 1mg and an adrenal function (really important) to speak of. However, my brain had lost the ability to work from lack of use, just like my muscles, so I decided to learn German. Interestingly, I got a very Covid-like illness in March and my word drop outs have come back and I’m back to going into a room and wondering why I am there. The upside is that I usually remember in minutes rather than giving it up to the driftwood of lost thoughts in my brain. So, who knows what it is. I do think there has probably been some sort vascular damage on a microscopic level and Pred does tend to grease the metaphorical thought pig that one is trying to catch. These things take time though and I always assume years to recover from major illness, by which time ageing has come into the mix.
"Brain fog" IS a listed adverse effect of pred - but it is also a common effect of a wide variety of autoimmune disorders which I can vouch for as I did have poorer concentration related to my work - I was a freelance translator and only in my early 50s when PMR turned up so still working and not on pred but also perimenopausal. I can remember reading the same paragraph several times to be sure it was right. When reading books sometimes it took several reads to get a point and I often repeated myself.
I also forgot to do things - never a problem for me before. It has improved over the years but I can feel when I am having a flare. My memory is much better though not perfect but I am older and have had 3 TGA events (transient global amnesia) which has also had an effect on long term memory.
Many people complain about lack of motivation. I don't know if it is that but while I can cope well with things I WANT to do off my own bat, I struggle when I feel under pressure from someone else to do something, however small or essential that thing might be. I have always been a learning-by-doing person - but that seems to be even more the case when learning a new technique.
My Mum had this type of experience after morphine related to hip replacement op. and took about 10 months to get back 100% Unfortunately the Pred has made her worse than that episode ever was starting about 9 days ago and 5 weeks after starting Pred. and I am researching. Not got too far yet, but it does seem 100% reversible in nearly everyone and not much short of 100% for the other 5% or so when get to low enough dose or stop and takes between a week to 4 weeks. I haven't seen anything on what low dose means on average presumably depending on weight as well as individual chemical makeup which can't be measured.
Yes, this has always happened to me, especially when having a flare, which I am trying to deal with now....it`s awful, the fatigue obviously makes it worse....I deal with it when talking to people by saying...what is my name now??...so they "get" what I`m feeling like....
We all know what it`s like.....
Put it down to both the illness- there are various articles relating to the effect of immune disease and forgetfulness - and the medication
Thank you all so much (this forum is so good I feel like we are friends). There is a lot here which describes exactly what I’m experiencing.
For the past 10 years I’ve been a freelance indexer and PMRpro’s comments about reading something several times rings so true!
There’s lots here for me to digest. I think I also need to explain some things to a few people who will be impacted by my condition.
The answer would be a definite "yes" for me. Foggy brain has followed me throughout my years of PMR. It was bad enough at one point that I gave up driving because I found I wasn't able to concentrate properly. It's much better now, but seems to pop up when I'm tired, stressed or in a flare.
I think this is a complication of pain. When the body is struggling with chronic pain. It is so focused on the pain that you lose focus of some of the things that you used to not have trouble remembering. I find that I have to record everything I want to remember. I put things I want to accomplish each day on my calendar as well as appointments. I use my phone as if it were my desk. I've also been told that it's helpful to work your mind so I play word games such as scrapple and other kind of word games I can find on play store.
Oh, the dreaded Brain Fog.
Others have mentioned the condition and the pred as possible culprits, but I'm going to add one more.
Disturbed sleep patterns and sleep deprivation, whether due to pred or the condition or pain or stress or other factors, can have enormous impact on memory, emotional stability, learning and concentration.
Thank you SO much for this post!! I’ve had brain fog since the onset of PMR diagnosis 3 weeks ago which is quite bewildering for me as I have a good memory! It’s getting better now but I’ve attributed it to the illness and sleep deprivation due to the Pred!
I think we all have additional challenges adapting to the changes PMR/pred brings when we previously led very different lives. I’m naturally well organised and am struggling to cope. But I’m starting to put some strategies in place which I hope will work. I’ve also explained the situation to some people I work with and suggested how they can help me.
Thank you for your reply! It certainly is very challenging and was a bit shocked 😨 by the unexpected diagnosis! It’s a bit harder living on ones own but I’m managing okay so far. I find this brain fog really difficult as I usually have very clear thinking and then ‘wham’ it was as if someone had hurled me against a wall when it eventually hit me at the end of June last month. Are certain people susceptible to this illness? I’ve read somewhere sometime ago that left-handed people are prone to autoimmune disorders: my daughter contracted RA 5 years ago and myself with PMR now. We are both left handed. I’m not sure if there is any substance to this theory. Best Wishes. x
Doubt handedness has much effect on the immune system - but there is a genetic predisposition.
Adrenal function
Things are looking brighter
Adrenal function at the lower doses of pred
Adrenal function riddle
