Mood and Cognitive Changes with Prednisone

Bones, joints and muscles
1

I know it’s not something we all like to think about or talk about, but I have noticed that my “head” has changed a bit during the two years of my PMR. My mood and cognitive abilities seem to have changed during corticosteroid treatment with prednisone and I’m not sure if is it just because I’m getting “older” – or is it the drugs ?

Reading all kinds of different things in papers, books, etc., it appears that the neuropsychiatric effects of corticosteroids are very complicated, unpredictable, and can be severe and identified across many aspects of mental and social disorders.

There seems to be a commonly used term - ‘steroid psychosis’, which describes a variety of specific conditions related to the results of taking corticosteroids and these include mood changes, anxiety symptoms, cognitive impairments, and behavioral changes.

During the many appointments that I have had with my doctor and rheumatologist, the ‘mention’ or review of steroid psychosis doesn’t seem to have come up at all, until I brought it up as a ‘passing’ question of interest. And the response was “so what condition of the psychosis do you have and what are you concerned about”

Wow !! How do I know – apparently it’s not the job of the rheumatologist to pick that up this topic early in the doctor/patient relationship and investigate potential issues with appropriate questioning!

So who should we go and see to find out ?

So what should we do to improve our understanding of potential and active corticosteroid-induced effects ?

What is the result of taking prednisone and how do you know if is the prednisone causing the problems or is it just “getting old”. Most of us with PMR taking prednisone are not youngsters.

Eileen has already mentioned all kinds of abnormalities of the hypothalamic–pituitary–adrenal (HPA) axis - and I understand that these HPA issues can result in mood disorders – is that a common result of taking prednisone and is it described as steroid psychosis  ?

I think that one of the best ways to know what might be happening to your “head” is to ask family members – they are the ones who would notice the mood changes – and my not be ‘chicken’ to tell you about yourself ! I know that I have indeed had some ‘mental’ cognitive changes over the last few years and a bit of mood change when PMR things are not so good and although I see and feel these impacts, others have not wanted to mention any changes they have noticed, unless it ‘bothers’ them, I guess.

And again – is this aging or prednisone ?

I know most of us don’t like discussing how our “heads” are functioning, but I would like to hear other’s thoughts on this matter.

Thanks, (reasonably sane) Dave

2

What an interesting and thought provoking theory - if my thoughts were a bit less disordered. Definitely my head is not all there! I put down my head problems to my chronic headaches - but as you suggest which came first : the chicken or the egg? Are these heady missfirings (which I also experience like electrical wires that have a short) caused by the pred or the PMR? Or perhaps just the ageing process? Then I think of Hilary Clinton who is my age running for president and it makes me envious of a clear and functioning head.

My short term memory is shocking and one embarrassing example is myinclination to repeat a story as "news" to the person who originally delivered it. I find myself having fractionally short dreams that bear no relationship to anything in my life, while fully awake - albeit bored or tired. While I can't put a finger on what is wrong with my head - I just know it is not right.

Surely it's time for some research on our condition? And the long-term side-effects of pred? However, perhaps we are a small number of sufferers in the grand scheme of medical conundrums. I know no one else in my little community in Harare who has PMR.

3

An interesting post.  I frequently refer to my "senior" moments as being caused by my prednisone brain.  I personally believe that all those things you suggested are caused by the drug.  I sometimes don't recognize myself with my responses to situations, again thinking it's the prednisone.  I can't concentrate worth beans, find it hard to even read the newspaper, have trouble recalling names, dates, etc. and on and on.  I'm sure age enters into all of this, but am anxious to see (if and when) I am able to get off the drug.  My family is quite away of this "strange" lady living in this house.  Never have a heard a word from my rheumatologist about this, but then I haven't brought it up, either.  Curious how others will respond. 

Also, reasonably sane (and really not that old) Linda (I'm in OR, Dave.)

4

I am totally n board with your post, Dave, and all the responses! My husband and I just returned from a theater event and I commented that about 3/4 of the way thru I just "lost interest", became quiet, ready to go home. I always feel about 7-8 seconds behnd in the conversation. I will soon be 69 and cnsidered myself n par with my friends, cognitively....not so much after 19 mnths n the prednisone. Thank you for bringing it up...misery does love company!😊

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I wonder if there is anyone who has NOT experienced cognitive weirdness! It is scary to believe that dementia is setting in when it is actually pred fog. Great sharing, Ann11195

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I did notice changes in my brain, but I could easily attribute that to the sleep interruptions that I dealt with earlier on in the course of my illness and treatment.

Also, my much-reduced activity, pre-treatment, had it's own effects on my mental perspective, as I was reduced to just reading most of the day.

But I,too, live in California, where it finally just rained, which might explain the rest.

7

I had some "head" changes almost immediately after starting Pred, but I think I was heading that way about the same time as PMR symptoms began..  I do not tolerate bad behaviour or negativity  - my fuze is lit instantly ! It shocks me and my husband - my thoughts are out instantly - and it is over as quick as it came.(a change for me)  Fortunatley husband is very peaceful - his eyes almost pop out of his head. I feel instantly relieved after venting, and we have a laugh or discussion. 

During a particularly stressful time (for me), I had a 'brain' shutdown. I think I was 'gone' for approx 40mins. When I snapped out of it, I did not know where I was, but recognised the people I was with.  I was not 'asleep' as when told what happened in that period, I was aware of what happened, but had no memory of it myself before being told. It did scare me. Both Dr and Specialist said it is definitly a PRED problem. The situation which created my excess stress would not have upset me to the same degree last year, before PMR.

 

I do warn people around me now, if they get negative, that I am on a steroidal short fuse.

I think I am reasonably sane, terribly forgetful, and more emotional. I had to turn the tele off tho unless it is a comedy show.

8

Hi Dave I too have pred brain which I feel is getting worse , apparantly I say things then minutes later I can't remember saying them, my daughters informed me of this just recently , again like you I think is it an age thing but I'm only 58 !!! Surely not. I watch films and half way through couldn't tell you what had happened . I am currently on 10mg of pred and waiting to start reducing slowly down I'm hoping that things will improve 

best wishes molly

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Hi Dave,don't know if it's the PMR or the Prednisone but my head is messed up too.I am dizzy and my brain is in a  fog.I tend to repeat things so my short term memory is  screwed up.No fluctuation in moods though.I am on an anti depressant so perhaps that's keeping my moods stable.My space perception is off as well.when walking yesterday I lifted my foot as if to climb a step except there was no step there.It freaks me out.

​To all my friends on Patient here's an update.I went to emergency at the U of A hospital yesterday because they have a huge rheumatology dept in this hospital and I accomplished what I went there for, They checked my eyes and so far they are fine despite blurry vision and jaw pain,headaches etc. They are also referring me to a new rheumi as the one I have is a quack,I;m sorry to say.So I'm really happy I went there.The prednisone is doing its job, my ESR and CRP are withing normal limits now. Can't wait to get off this drug cause I look like Fiona from Shrek with my moon face lol. Does anyone know if the moon face goes away after the steroids end?

Kimberly

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pred brain, pred highs, pred lows, short term memory loss, rapid mood swings, impaired judgement.

I was once described as being paid to think. Used to complex engineering and people problems. Fairly sensitive to what goes on with my mind. Very used to remaining objective during sustained stress - so I've been told.

Obviously difficult to separate some of the pred side effects from ageing but the effects have reduced with pred reduction. Also some effects are the same as simply being very tired and lacking energy.

At 4.5mg/day I'm almost back to "normal". But not quite. And harder to know as the effects seem much more subtle.

There were enough descriptions on this forum to satisfy myself that I was suffering side effects. Once I thought I knew what was occurring I felt I could reasonably manage it. And I really didn't want more medication. I somehow didn't feel the need to have my doctor tell me about side effects, it seemed there were more important things.

Very difficult to ever be sure. Most effective was talking to my better half about it. Harder on her than on me. At least I could delude myself I was in some sort of control. It requires a peculiar sort of honesty to be able to tell someone they have changed. How is even harder.

It seemed important to put extra work into preserving relationships - which is quite difficult when the pmr is consuming so much energy there's not much left over. Its for others to judge how successful I've been.

The mood swings needed a bit of learning. How to catch them and simply walk away instead of exploding. Slow learner, I didn't always catch them early enough.

Sometimes hating myself while listening to what I was unusually willing to say, despite the hurt. Once I realised it was relatively easy to stop, I tend to think before I speak.

Very frustrating rebuilding my truck. What should have been simple problems became enormous unfathomable hurdles.

I mildly enjoyed the pred highs. A better alternative than low, though middle would have been nice. Friends were fairly tolerant and seemed to get a bit used to "silly mode".

An early pred high I simply knew I wasn't "me" but lost my reference point. Very confusing for about a week while I found myself and worked out what was happening.

The lows are to be "stood on" lest they become lower. I dig myself out in a variety of ways, but basically small steps in a positive direction. Fortunately they don't last long. I've generally removed a lot of stress from my life. Keeping fit and maintaining energy levels has been difficult.

For the first time in my life I've resorted to writing lists. The rehab people expect me to remember the bp reading they take while exercising - harder as the exercise becomes harder.

On about 10mg/day I did some computer programming. After an interesting conversation with fellow sufferer I looked back on a programme and what I thought was logical at the time was like spaghetti. Scary stuff. Knowing made it easier.

Interesting times, as they say.

11

A question Dave, interesting is!!

I'm only 55 and was diagnosed with PMR when just turned 54, 18 months ago, so I don't think any changes that I am experiencing can be blamed on age: well not as much anyway! 

Looking back, I think PMR was lurking at least 2 years prior to it exploding and my diagnosis.  Certainly during the year prior to diagnosis, everything just seemed to be such a struggle and I found it difficult to concentrate on anything, especially as I seemed to have a constant migraine.  I think this was more to do with mild depression caused by the developing PMR.

Once on steroids my mood improved, which has a lot to do with the relief of severe pain, headaches and fatigue.  However, when I was on the higher dose, I noticed that I became anxious about doing the simplest of things, shakey and hyper-sensitive.  I'm now in the process of going down to 3.5mg and the anxiety is much improved.  My level of concentration is pretty good, but I still suffer from fatigue on a daily basis, which I think is bound to affect this.  I also find that I often have difficulty responding to people quickly, finding he words that I need and generally getting a bit jumbled!  This can be tricky when teaching, but I think my pupils just think I'm a bit scatter-brained!

I do question how much of this is to do with the steroids and how much is to do with PMR/GCA and the stress of dealing with it. 

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Hi Kimberley,have had 4 longish courses of prednisolone and each time on stopping the moon face has gone.Last course I also got the steroid hump which thankfully is also going.Just the excessive weight gain (>3stone)to go.One stone gone two to go then just the extra seven I need to lose 😁

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Do not fret I think most of us have suffered from what I describe as a mushy brain and I am only 57

14

Thanks Gillian good to know this moon face will go once off pred. Then I'll be Kim again not Fiona from Shrek lol

15

I think this is the way I am and pred hasn't made any difference, but I am now in the habit of stopping myself as I start to tell a story (i.e. an event in my life, a news item, family anecdote, whatever) and ask the person I'm talking to, "Have I told you this already?" because I have no idea who, if anyone, I have told the story to. 

16

I have one friend on another forum who was put on high dose pred because of query GCA - and she went into pretty much full-blown psychosis. There is some very interesting reading online about psychosis if you can find it - and no, I can't give you links because it is stuff I read about psychosis in a totally different context, not pred.

Flutterbie - I had the short fuse experience, I really don't suffer fools gladly anyway but with PMR it got far worse causing even my husband who is used to it to comment. One occasion I remember clearly was shortly before I had a transient global amnesia episode - total loss of longer term memory which typically lasts 6 - 8 hours before "normal service" is resumed, leaving some residual loss of memory of past events. Which don't you think sound similar to the 40 min you experienced? No-one knows what causes them and - it was said in the UK - are rare (no they aren't) but only happen once (I've had a second!). I had a CT done the second time to rule out stroke - no memory at all of it which annoys me intensely!

My main point though is that I wasn't on pred at the time. I had 5 years of PMR and no pred - and I can relate to all the things pred is accused of as part of PMR/GCA (I have only PMR symptoms and responded well to 15mg pred but I almost certainly am sort of borderline between the two given some of the symptoms I had).

I was 51/52 when PMR appeared on the scene - again, aging shouldn't be too much of a factor although over 50 is an older adult (sorry, but there it is). I also suffered the lack of confidence issues and they are still there for a few things though much better. I had the concentration problems - knew I had to read translations extra carefully to be sure they weren't crackers! Later I couldn't see any great difference with pred - but my memory wasn't ever as good as it used to be.

The good news though is that it does improve - my memory is pretty much back to where it was although I know there are things I feel I should remember much better from the past. If my husband can remember then so should I given his memory! I find learning new skills far better than in much of the lat 10 years - I went through one period when any new thing on the computer had to be written down for me! Now I will explore on my own a bit without having a meltdown. What does remain is a total lack of desire to explore cooking anything fiddly - it was my hobby until PMR and its physical limitations came along. Show me a recipe with more than 4 ingredients and needing more than a bit of chopping and sauteeing and you can take it away again! If you want that, I'll go out to dinner thanks!

17

Wow!!! Dave, what a good discussion and observation on your part. And yes, sad they don't really include it when talking about symptoms. Plus the doctors just want to give anti depressant drugs.

i was a software engineer but took early retirement just because I hated my job. But was fairly smart. 

As a hobby I got in to painting and jewelry making and being creative, ha...using my other side of brain... But now...can't do any of it!!!!  Could care less... My PMR pains make me feel like a failure everyday, so trying to be creative or even draw, I feel like a failure. I don't or can't concentrate to do the drawing right.  Struggle reading anything other than this forum or reading about drugs, acid reflux, thyroid, health matters. Ha.

and with others... I love TV shows, but can't stand anything too negative...

I don't like to be around people either, having energy to socialize is too hard.  And I dont have much to say anymore either. 

I just want peace... My new mantra I say when I wake up is... "Just Joy" and when I can feel that inside I can easily smile and NOT feel pain at that moment.

I've even set my digital watch timer to go off every 30 minutes and remind myself to be "just joy" and in the present moment.

 

18

A lady in South Wales was a very successful jewelry designer and maker until she developed GCA. It upset her greatly - but she did get back to doing it after a while. She had to do different stuff and less of it but she said it made her feel so much better to be able to do something with it.

Another lady had never been crafty in her life - but took up card making and has raised a lot of money for charity (dogs and PMRGCA) through it.

Both of them had both mental and physical problems and struggled but their struggles paid off. Maybe you will be back there in the not too distant future. Never say never...

19

Thanks Eileen!!!

i love to make cards, but depress myself because seems no one sends them anymore.  I used to love to send Holiday cards at Christmas time, but never hear back from people, so I've given up.

BUT you stated great idea! Maybe I could make some to donate to charity or fund raisers! Maybe SOMEBODY would still send people cards in the physical mail! 

20

I noticed these "head changes" when I was on higher than 10 mg prednisone.  It was quite disturbing to me, and my family noticed  the change with me.

I did mention that it is due to prednisone.....not age particularly. I feel it is getting better, and I am starting to feel more myself.