Fuzzy brain

[Asbeck]

I am fairly well with my mostly GCA and sometimes moderate PMR and so very grateful for all of you over the years. Currently, I am trying to reduce from 3 mg Pred. down to 2.75 and having a hard time. (I have failed at trying for 2.5, and have messed around at 3.5 and 3.25.) I am staying for 1 month at a sequence of one new low dose of 2.75 mg. and 4 old daily doses of 3. I am accustomed to having a hard time beginning after about 60 hours from a new lower dose. Whatever it is that the (old higher dose) of Pred does, it begins to abate at about 60 hours from the new lower dose. Since I am fairly well (after about 7 years), I have not paid attention to fuzzy brain. When I was sicker, I was too worried about other symptoms to notice. But I'm really having fuzzy brain during that 3rd day after the morning's lower dose. I've heard many of you talk about fuzzy brain. I don't think that it's bad enough to be aphasia. But it's disconcerting. I'm getting pretty healthy. Don't drink alcohol. Do we know why it happens? *

Thanks! Any help you can provide would be welcome. And sorry for the length of this post.

*It's not horrible. I'm hiring a band for my daughter's wedding to be held in a year and I could not think of the major, annual parties in town that have a dance band which I wanted the band to emulate. The "names" would not come to me. I'm talking about easy names like "Red Cross Ball," Remembering this is not rocket science. It happened also even worse during the prior sequence. I stopped working and read a book! One time I forgot the word, "glass." "Husband, do you want me to bring your _________?" So it's chronic, but limited to a day or so.

[Hidden]

Hi, prior to dx I genuinely was. Going to the drs to get tested for early onset dementia. I couldn't remember things like what slippers were called and other everyday items. I couldn't finish sentences. It got better with pred but I seem to be having fluttery flares that seem to leave me with that brain fog again. I don't know what the significance of it occurring as you taper but at the doses you are on now perhaps adrenals etc working against you as you taper and pred withdrawal. Any chance of just staying longer at each drop to get your body used to it. Your drops are really sensible at the dose you are on but as we know the smallest dose can make a big difference. Hopefully others will have advice! PMRpro linked a paper on pred withdrawal. 🌻

healthunlocked.com/pmrgcauk...

[Yellowbluebell in reply to Hidden]

I have been like that since starting pred and probably for a bit before that. I rely on OH to guess which word i am looking for but when in court i have crib notes and a fantastic junior who is getting very good at whispering when I am desperate🤪😜

[Hidden in reply to Yellowbluebell]

It is a weird feeling when the word for something just floats off🤪

[Yellowbluebell in reply to Hidden]

I have come out with some interesting alternatives luckily none whilst at work!! Xx

[Asbeck in reply to Yellowbluebell]

Thank you Yellowbluebell. It's so wonderful to turn to this site when you're feeling scared and find so much support and help.

[Yellowbluebell in reply to Asbeck]

Even if we cant solve your problems we have usually experienced them and can commiserate with you. Soneone will usually have had the same things in their time with pmr. Or in my case just pray you dont call the judge something rude and get put in the cells😈. YBB

[Asbeck in reply to Hidden]

Thank you Poopadoopy!

[Asbeck in reply to Hidden]

Poopadoopy: I read PMRpro's link which you provided. I had some knowledge about the adrenal glands and had thought that I was long over that hurdle. But I didn't think much about the hydro thorax (or whatever it is). At any rate I'm happy and relieved that it might be Prednisone withdrawal. Good riddance! Thanks for taking the time.

[Bird-67]

My brain has been like that for months now. I am down to 10mgs Pred now and trying to reduce to lower but getting awful headache and eye pain.

I had a blood test a week ago and my readings were fine so wondered if it was withdrawal symptoms.

Good luck,

Bird 🦜

[Asbeck in reply to Bird-67]

Thank you Bird-76

[SheffieldJane in reply to Bird-67]

Still be alert for GCA. It doesn’t follow the blood test results sometime. I have just been diagnosed wit head and eye pain ( GCA). Nothing else yet. Head and energy improving at 30 mgs. CRP and ESR raised for me - first time ever. Don’t go lower unless this settles.

[Bird-67 in reply to SheffieldJane]

Thanks for your reply SheffieldJane.

My Rheumatologist told me to keep on 10mgs for 2 weeks then reduce again but I am still having problems now that I’m back on 10mgs.

I have had GCA for 15 months now and started on 60mgs. I don’t know whether to phone again.

Bird 🦜

[SheffieldJane in reply to Bird-67]

I would. The potential consequences are too serious to be hesitant.

[PMRpro Ambassador in reply to Bird-67]

If you have symptoms at 10mg the last thing you should do is reduce any further.

[Bird-67 in reply to PMRpro]

Yes that’s what I thought.

Is it possible for my readings to be normal while having a flare please?

[PMRpro Ambassador in reply to Bird-67]

I think so - and so do others here. Even the odd rheumy. But we are just patients with experience - and for a lot of doctors that doesn't count.

[Bird-67 in reply to PMRpro]

Thank you, I shall phone them first thing in the morning.

The pain goes through my left eye to the back of my head and into my gums. It also feels like a knot at the base of my neck and my eye burns.

[bunnymom in reply to SheffieldJane]

Glad you are feeling better Jane.

[SheffieldJane in reply to bunnymom]

Thanks bunnymom! 🌸

[jinasc]

I had GCA, this is what I ran into:

'Steroid Brain Fog' or 'Treacle Brain'.

Dropping things, they just slid out of your hands.

Putting stuff away in the wrong place ie in the Fridge instead of the Freezer and 'vicki verka'.

Clean clothes out of the dryer and then putting them in the washing machine.

It does get better.

[SheffieldJane]

I was exactly the same at 3 mgs. Films, Actors, musicians - gone! Fortunately my husband of 34 years can finish all my sentences. I have just developed GCA and am on 30 mgs and my brain is sharper. I now wonder if my sluggish Adrenal glands were the culprit?

Daughter’s weddings are stressful on so many levels as well. Sounds like you are pulling the hat out of the bag again Mum!

I will be interested in the replies you get. I have dementia in my family and really don’t want that fate. Pred Head we call it. Let’s hope it wears off.

[PMRpro Ambassador in reply to SheffieldJane]

I've noticed a change in you too. I suspect it was the GCA affecting blood flow to the brain - if there are signs in the brachial artery it is likely to be affecting other vessels, including the carotid and other arteries supplying the brain.

[Hidden in reply to SheffieldJane]

Me too. Your mental acuity much better. You are like you used to be on screen anyway. Maybe a mixture of adrenals but having GCA treated sounds logical. 👍🌻

[SheffieldJane in reply to Hidden]

Thanks for the useful and interesting feedback.

Mind you, I don’t think it is pull the hat out of the bag, I think it is the rabbit out of the hat and the cat out of the bag. So there are lapses. 😂

[Hidden in reply to SheffieldJane]

🤣😂🤣

[Hidden in reply to SheffieldJane]

You caught it. 🤗 . Sometimes I’m not sure what are local expressions, what are typos, and what is me being dense. 🤪

[Hidden in reply to Hidden]

You can think it through!!!

[SheffieldJane in reply to Hidden]

On a good day. 🙂

[Asbeck in reply to SheffieldJane]

Thank you SheffieldJane. It's comforting to know that your "new" troubles had started at around 3 mg. And here I had thought that I was on my way up and out. We'll see. But I'm always heartened to see that so many people respond, even after so many years.

[DorsetLady PMRGCAuk volunteer]

Hi,

here are copies of articles regarding brain fog - or whatever you want to call it _

not necessarily about PMR or GCA but other inflammatory illnesses which may help-

creakyjoints.org/living-wit...

portfolio.cpl.co.uk/inspire...

[Asbeck in reply to DorsetLady]

You have always been one of my heros. Thank you for the articles. So far it's only on the 3rd day after a lower dose. We'll see. I could be so much worse.