Fuzzy 'steroid head'

[Stroppymoo]

Have been finding it hard to concentrate and stumbling over words in conversations since starting steroids in May 2016. I was particularly bad at 12 - 10 mg. I'm now down to 6mg/day, but still fee woolly headed. Will my concentration levels ever be 'normal' again I wonder? Or it is natural getting older. I was 54 when diagnosed and am now 56.

[DorsetLady PMRGCAuk volunteer]

Hi Stroppymoo,

Steroid head is what it is....it’s also associated with the PMR...once you’re off the steroids and the PMR has gone into remission ...you will get your brain back!

[Rose54]

Hi

I am just going down from 8.5 to 8.00 and last night my son was in fits of laughter al night

Don't know what comes out of my mouth sometimes

I was trying to find something decent to watch on TV and said Why is it with all these channels their is still nothing good to eat .

Before that l just piped out was going to change jobs and open a sex chat line so i could work from home .

HIs reply was i would have to ask then to hold the line while i changed hands holding the phone as i had PMR

I appear to have no control over things at times but it does brighten up the day

[DorsetLady PMRGCAuk volunteer in reply to Rose54]

Oh love the quote about a sex chat line. The mind boggles - well mine does anyway 🤨🤔😄

[Sandy1947 in reply to Rose54]

Thanks for the laugh! So glad it’s not just me. Sometimes the words don’t come, oh well, c’est la vie! Love me anyway just the way I am!

[Purplegirl70 in reply to Rose54]

So glad it's not just me who struggles with words. I think people must think I'm drunk sometimes 😁

[PMRpro Ambassador in reply to Purplegirl70]

As long as you're not disorderly!!!!

[Purplegirl70 in reply to PMRpro]

Not yet but who knows what the future may bring 🤣

[Rose54 in reply to Purplegirl70]

When I fist started on Steroids I would wobble all over the pavement I got stopped by a policeman asking if I was ok he thought I had been drinking .

I thought it was hilarious as i had just finished work .

[Purplegirl70 in reply to Rose54]

Some of my 'customers' would probably think me appearing to be drunk at work was 'sic' (I manage student accommodation, need I say more!)

[pollyg263]

ha ha ha, still on steroids after 5 years now down to 3 & 2.5 still fuzzy head, but thanks dorset lady for saying it does go when off steroids. only last week I was telling my friend she was a wet blanket. and it can out as a wet dr___. at 75 years where had that come from

[Hidden]

I'd kill for "fuzzy." Having just tapered down from 80mg to 75mg to 70mg... I glide between states of being bewildered, discombobulated and totally disorientated. Half the time the time I have no idea what's going on, and the other half... I don't give a damn!

[Jackoh]

Yes go through phases where can't find the right words, can't explain myself properly, lose concentration halfway through explaining something and don't know where I'm going with the conversation etc etc. Tried again to go with the flow: if I'm stuck I'll just say it's the tablets and not try too hard. If I do get worked up about it I'd feel more stress. My neighbour of 85 thinks it's wonderful that I'm in the same position as her re explaining things and remembering details etc. At least I've made somebody's day!!

[Pam47]

Good to know this is temporary! At a family lunch at my parents' house last weekend I suggested we heat up the fridge so we could cook the pizzas. My sister later asked me why I was eating some pavlova. When I looked puzzled she said, you opted for the gateau, ate two bites and have left the rest in the kitchen. I had no memory whatsoever of doing this.

[SheffieldJane]

I have nominal amnesia. A conversation stopper that means that you cannot remember names. Normal for us I’m afraid.🤔

[Stroppymoo in reply to SheffieldJane]

thank the lord for that. lol

[JD4pmr]

Oh wonderful forum ! Knowing ones not alone in this crazy PMR life, maybe at 77 I'll stop blaming it on Alzheimers setting in and go for the 'its the steroids' explanation, at least that has a possible light at the end of the tunnel. I agree that going with the flow helps, struggling to remember and getting stressed is totally counterproductive. Thanks for bringing this up Stroppymoo !

[stellafmdm]

Hi stroppymoo, I had the misfortune to be diagnosed with mild cognitive impairment before the dreaded PMR struck, so you can imagine my on going confusion with steroid fuzzy brain as well!!!!

[PMRpro Ambassador]

At this low dose there is another raisin to add to the mix - below about 7mg your adrenal function has to get itself into gear and low adrenal function can ALSO cause brain fog.

But honestly - it does get better!

[Sandy1947 in reply to PMRpro]

Thanks for the vote of confidence re. improvement! I have gone from book clubs to reading inspiring quotes and audio books since diminished concentration. Going to lectures and short museum tours. Actually, lasted a long time on a Greenwich Village tour. I’m forcing myself to work on this. It’s a challenge like all of PMR.

[Stroppymoo in reply to PMRpro]

go no doctors appointments at the moment. Will ask about adrenal function next time. ty.

[Grants148]

I am down to 3mgs of preds stroppymoo,and sadly still have some brain fog,never mind though,l take comfort from not being the only one which is a bit mean as l would not wish it on anyone else.Are you really a stroppymoo ......?

[Stroppymoo in reply to Grants148]

My real name is Julia which is taken by so many forums. Stroppymoo is much less! Trouble is I have to work as pmr is not recognized by Department of Working Pensions (benefits). Strenuous work as care assistant in care home and we all get a bad name in the media. However, I want to study medication, as there is less physical work, but worried about my memory.

[Maggiemudshark]

Hi I have brain fog as well , I was diagnosed November 8 2017am tapering now from 15 to 14 mg feel better but have trouble collecting my thoughts and remembering many things, forgetting names in particular and I do not know why I say certain words they come out wrong. Very frustrating.

[Stroppymoo in reply to Maggiemudshark]

I had that on your dosage, but less so now. Am alternating between 6 and 5 atm. March hopefully down to five. Not a race. Was down to 5mg 2016, but had a flare. One year l8r may be winning, but can never tell.

[Rimmy]

'Woolly headed' - yes - especially when I have been ignoring all that stuff (as discussed on another current post) about 'spoons' !! Overdoing it doesn't help any of this - that's for sure - and when it gets really bad I find I have VERY droopy eyelids - which I thought (pre-Pred & PMR/GCA diagnoses) must be a 'sugar low' - and it wasn't. All of this stuff MUST end one day - but then I will be older anyway so I'm wondering what kind of 'self' I'll ever 'get back' ... !

[PMRpro Ambassador in reply to Rimmy]

Have you spoken to your doctor about the droopy eyelids? If it is both - it may be due to an underlying medical condition, also autoimmune.

[Rimmy in reply to PMRpro]

No I haven't PMRpro - I just assumed it was part of the fatigue/tiredness aspect as it comes and goes. But I will ask about it and I'd appreciate any additional info you may have about it being related to any other ? AI diseases.

Thanks

[Rimmy in reply to PMRpro]

Oh I know about Myasthenia Gravis but it is more just like a heavy lidded feeling rather than the really 'droopy' look of an almost closed eye or eyes - but I can see why you would think of this AI disease given its relationships to others. Still i will discuss it with my GP 'in case'.

[PMRpro Ambassador in reply to Rimmy]

Early stages and all that...

[Stroppymoo in reply to Rimmy]

I just drag myself along. Have to, can't afford to be ill. Terrible, not recognized like RA or Fibomyalgia.

[PMRpixie in reply to Rimmy]

You're the first person who has mentioned drooping eye kids. I have the same?? Sometimes keeping them open gives me a tension headache. Don't believe it's mg though. Thought part of general weaknesses?

[Rimmy in reply to PMRpixie]

Yes not -I am fairly sure MG type 'drooping' - more very heavy lids - but seems almost certainly related to our AI illnesses - especially when fatigued. If I rest 'properly' for a day or so it usually helps and the heavy lids disappear. This resting is something I struggle with though as I always seem to have so much to do - we have been reviving an old stone fruit and apple orchard. But it is interesting others have not mentioned this so I will do more research when I can.

[SheffieldJane]

It may be worth challenging that ruling stroppymoo. It could just have been the opinion of one jobsworth. To my mind PMR meets all the criteria and they should like it because in most cases it gets better.

[PMRpixie]

I call it brain fog. The other night we were leaving the house (me last). My husband said "aren't you going to close the door?" Feels so frustrating and others don't have a clue. Sometimes typing a letter and can't remember how to spell simple word. Extremely hard to explain others.

[Grants148]

Hi Stroppymoo,my comments were only meant in a light hearted way,l thought it a great name,especially as l have often been feeling very stroppy with PMR. I think that carers do an amazing job and it must be hard for you coping with the PMR and the caring that you do which obviously means that you have to lift people sometimes. I think that PMR should be diagnosed as a disability, l found it very life changing and l am not the person l used to be. All the best from Patricia xx