Fuzzy Brain whilst on Prednisolone for PMR

I was diagnosed with PMR in October 2020 and have been tapering down from 30mg of Prednisolone, now on 17.5mg. (Although still in quite a bit of pain and stiffness) However I have such a fuzzy brain that makes day to day life hard and very slow in things that I do, does anyone else suffer from this.

[SheffieldJane]

Yes. We call it “Pred Head”. It manifests in me as being forgetful of names. For instance, if I am discussing a film, the lead actor’s name will disappear, only to reappear when the conversation is long over. I am quite forgetful and muddle headed. It alarms me because my mother and maternal grandmother developed Dementia and I fear the same fate. I am hoping that this will disappear as I decrease my dose. Currently on 10 mgs.

[Pmrmolly2018 in reply to SheffieldJane]

Hi..how long have you been on 10mg. I can’t get below, have tried several times for 9.5 but even on DS method and 3 Weeks had to go,back to 10 for comfort..not cure tho. Should I worry.

[SheffieldJane in reply to Pmrmolly2018]

In answer to “ should you worry?”, we’ll no, it is a well documented side effect that a lot of us share and even joke about, that does seem to improve with the reduction of dose.

I was diagnosed with PMR in Fed 2016, I had tapered down to 3 mgs ( I think my brain was sharper) then I was diagnosed with GVA/LVV and had to go up to 40 mgs about 9 months ago, with the help of Actemra I got down to 10 mgs Pred but cannot seem to get below 10 mgs without GCA type symptoms. So this time it’s been about 7 months. I am very aware of the brain fog and wonder if it is made worse by Actemra/Tocilizumab?

[Pmrmolly2018 in reply to SheffieldJane]

Thanks for your reply..now nearly 3 years and seems such a long time. Current dose only lasts about 18 hours..split into 2 x 5 mg..then leg muscle and upper arm pain kick in. Oh to feel ‘normal’!

[PMRpro Ambassador in reply to Pmrmolly2018]

How are you splitting the dose and at what times? That may be the culprit for the short duration of effect.

[Pmrmolly2018 in reply to PMRpro]

About 5am and 7pm..I wake early. ..and bed for legs to.

[PMRpro Ambassador in reply to Pmrmolly2018]

Everyone is different but a more usually recommended split is 2/3 early in the day and the rest late enough to carry the anti-inflammatory effect overnight. The ideal time for the early dose is 2am - the morning inflammation never gets a chance to get a hold so it works better. Have you tried experimenting with the dose/time at all?

[PMRpro Ambassador in reply to SheffieldJane]

People have complained of brain fog when on tocilizumab - but if you need some pred it does suggest that the GCA is alive and well and creating inflammation. And we know it can be a symptoms of inflammation.

[SheffieldJane in reply to PMRpro]

Today my husband brought me some lovely red and gold tulips. I said “ lovely! Wasps. Should I be worried? 😉

[PMRpro Ambassador in reply to SheffieldJane]

Bit cold for wasps yet isn't it?

[pomeranion in reply to SheffieldJane]

Hi. what is GVA/LVV?

[PMRpro Ambassador in reply to pomeranion]

Giant Cell Arteritis and Large Vessel Vasculitis (The GVA is a typo, she corrects it in the following sentence)

academic.oup.com/rheumatolo...

[pomeranion in reply to PMRpro]

Thank you for the clarification. So nice to be online with you in real time. You have been so helpful for someone in the midwest US. I feel we must be so far behind in this country. If not for my sister having PMR last year I would still be suffering so terribly. I'm experiencing some relief at 40mgs. for 8days. Will start tapering soon per my GP. Have RA and will see rheumatologist in a month. I will keep up with learning about all of my health concerns.

[Fiddlersmum in reply to SheffieldJane]

That’s me too - I can be having a conversation with someone in the village when out on my socially distanced walk and for the life of me I can’t give them a name - the dementia thing is never far from my thoughts but in reality I know it’s Pred!

[Hidden in reply to SheffieldJane]

Thank you, mine as described by my kids is that ‘I faff’ everything just takes forever. I suppose linked with stiffness I’m just comparing life before this illness and now brain fog and stiffness slows everything down. Feel like I’m 90 years old at times.

[Fiddlersmum]

Oh yes - definitely have fuzzy brain issues - I do things going to make a drink but I have to ponder which cupboard the coffee is kept in. Hubby teases me (in a nice way) but I don’t think he has any idea how scary it feels !

[Hidden in reply to Fiddlersmum]

Yes I’m the same and following a recipe is a nightmare. So many negative side effects!!

[Fiddlersmum in reply to Hidden]

I can go with that - forgot to out yeast in my bread machine the other day !

[Rosbud in reply to Fiddlersmum]

I made cupcakes forgot the sugar , hubby still ate them , bless him , think he doesn’t want to upset my pred moods x

[PMRpro Ambassador in reply to Rosbud]

It is alleged you can cut sugar in cake recipes by at least a third and it will make little difference - not sure about 100% though!

[Rosbud in reply to PMRpro]

I already substitute Sweetex for half the sugar content as OH is type 2 and it works really well and of course whole meal flour x

[Francesbarbara in reply to Hidden]

Have given up recipes that last for more than half a page - and feel happier about it.

[PuttyPenguin]

Yep, I was the same. I wondered if I was getting dementia and as I had to have an MRI on my head anyway, I asked them to look for signs of that dreaded disease - and there weren't any. Please try not to worry.

[Snuggs]

This is a good question. I am newly diagnosed 4 weeks ago and have brain fog from the fatigue. I thought it would go once I started steroid treatment (currently on 12.5), but it doesn't seem to have improved. I have been off work for the past three months unable to do the smallest task both mentally and physically. I am due to go back next Monday and I am very worried about the brain fog and memory issues. This forum is so supportive and informative it definitely makes you feel you are not alone. Thank you all. JHolbeck the answer is a big fat YES. It would be good to hear how everyone copes and deals with it.

[PMRpro Ambassador in reply to Snuggs]

The steroids don't have any effect on the actual underlying autoimmune disease, like almost all autoimmune disorders, the treatment helps manage the symptoms, little else.

The brain fog can also be due to the pred - that aspect should improve over time as your body becomes more used to the pred and the dose reduces. I have found the brain fog from either has practically gone except if I am having a flare or am overtired for any reason. My memory is back to what it was (apart from a bit of aging) but I do find that I can be writing a reply and suddenly I run out of oomph on that topic and have to stop. I then go to another reply and am fine.

Both are something you have to learn to manage - and not getting overtired is absolutely crucial for either of them. The links in this post may be helpful:

healthunlocked.com/pmrgcauk......

[Snuggs in reply to PMRpro]

Thank you so much I will go read now. I have so much to learn 😊