Re pred head and reduction

[stellafmdm]

Can anyone tell me at what stage of reduction one gets one's own, pre pred, head back? O maybe it varies from person to person?

[DorsetLady PMRGCAuk volunteer]

I think it does depend on individuals, and it’s also down to the illness (or at least the inflammation side of things) as much as the Pred.

Arthritis groups are very often discussing the Brain Fog caused by the inflammation of arthritis and the medication taken.

Happy days 😏

[PMRpro Ambassador]

I think it varies from person to person - and I also think it is just as much a manifestation of PMR as of pred. I had real brain fog with PMR, I would read a sentence I was translating/had just translated several times to be sure it was right. That improved noticeably once I was on pred.

It is a common thing in autoimmune disease and with many medications. I tried methotrexate earlier this year. Although I was on 9mg of pred at the time the brain fog appeared with mtx and departed when I stopped it - and I'm currently on 15mg and no brain fog I'm aware of.

[stellafmdm in reply to PMRpro]

My Rheumy wants to put me on MTX and I've been resisting, but maybe I'll give in if it helps the brain. I'm a total idiot at the moment. I do the Lumosity training excercises and my personal score has gone from 1121 down to 1070 and that was not the lowest!! I've completely lost my short term memory too!!

[PMRpro Ambassador in reply to stellafmdm]

No, no, wrong way round - it STARTED with mtx, horrible stuff IMHO! It seemed to make anything possibly pred-related worse - it is supposed to potentiate the anti-inflammatory effect of pred, it seemed to only make the adverse effects of pred get worse or even happen at all for me!

[Marijo1951 in reply to PMRpro]

Well, I have to differ. I've been taking methotrexate for nearly a year and I haven't found it has made my brain fog or any other pred side effect worse - so really we all have to test these things for ourselves. By the way meth has made my hair curl for the first time in my life, which is a bit disconcerting...

[PMRpro Ambassador in reply to Marijo1951]

Pred gave me curls - mtx just made it fall out in clumps within days! Everyone is different luckily - but it isn't a miracle and it does have a lot of side effects. It is said about a third of patients discontinue it because of the side effects. My husband has the horrors about mtx, although to be fair it was at chemotherapy doses.

[Marijo1951 in reply to PMRpro]

Well I can't pretend the pred head hasn't gone away. Yesterday I went to Birmingham for the day as my grandson, who's a chorister with the Cathedral there, was singing in a carol concert. The night before I'd supposedly put everything I needed on the coffee table. I got on the bus to the Tube station and something (my subconscious?) made me check if I'd got my train tickets and Senior Rail Pass - of course, I hadn't. So, it was off the bus, leg it back home, find them in a drawer and out for the bus again. Fortunately I had started out originally fairly early so I got to Euston in time. Anyway there were no other mishaps, they sang beautifully and I did a total of 11,097 steps, the most in a day for months. This makes me think I might be getting better - I probably wouldn't have contemplated there and back in a day not so long ago and, if I had, the setback of having to go back home would have made me give up the venture altogether.

[PMRpro Ambassador in reply to Marijo1951]

Oh how lovely - the reason, not the journey!!!

[bunnymom in reply to Marijo1951]

Good for you being able to make such a trip. You have indeed come a long way that you didn't give up and say home. Just when I think my pred head is better I do some little thing that shows me it's lurking still. I have a hard time figuring things out

[stellafmdm in reply to PMRpro]

Pred Head again!!!!!

[PMRpro Ambassador in reply to stellafmdm]

Hehe! Doesn't matter - it all comes out in the wash...

[Daisychain12]

Stella. Great question. My personality has completely changed. It’s not fog either. It is fog, I mean, but more than that. I just seem to have lost a lot of what made me who I am and gained other traits that I dislike. Sorry xxx

[stellafmdm in reply to Daisychain12]

O Daisychain never despair, the good things will come back, it is just a question of when!! xxx

[Daisychain12 in reply to stellafmdm]

Yes it's a lot of waiting with PMR isn't it Stella xxxxxx

[MhairiP]

I still get pred-head/PMR-head - I'm now on 5mg. I'm ok most of the time, but if I have a challenging situation - something that requires brain power - my brain can't cope. Fortunately it doesn't happen too often!

[Daisychain12 in reply to MhairiP]

I get that. I actually clutch my head like a cartoon character. Hugs xxxxx

[PMRpro Ambassador in reply to MhairiP]

My challenging situation is packing a case to go away. Especially if OH is anywhere in the flat and wittering...

[MhairiP in reply to PMRpro]

Oh yes - that requires concentration, and there are so many 'what ifs'!

[bunnymom in reply to MhairiP]

Exactly. I can't do anything on the spot anymore.

[Daisychain12]

that. I actually clutch my head like a cartoon character. Hugs xxxxx

[Grants148]

I find that being over tired makes the brain fog worse ,and stress certainly does not help ,l get very confused if l am upset about something,and l am sure the Pred causes me to be hypersensitive which means that l get upset very easily and everything can be blown out of proportion.l have no idea how the brain fog gets better as l am still taking the steroid.ATB Stella.

[SheffieldJane]

Good question. I am beginning to think that I was always a bit stupid. 🤭

[stellafmdm in reply to SheffieldJane]

I bet you weren't SJ! I believe my Lumosity personal score which went down from 1121 to 1070 and has been lower than that!

[bunnymom in reply to SheffieldJane]

Oh Jane we ve been on pred so long we've forgotten our old selves. We are bright women 💡

[SheffieldJane in reply to bunnymom]

Even my grandson says that “ You are not very good at anything are you Granny”? I said “no I’m not, except being your granny”. He gave me that and said that’s why he loves me best. So I’ll do, even if I can’t do hard Lego.

[bunnymom in reply to SheffieldJane]

Oh my he's very observant but devoted just the same. I could never do hard Legos anyway. Think that today is the day I start making things off the list that aren't going to get done before Xmas. I'm ok with that tho. Enjoy your family 🎅

[SheffieldJane in reply to bunnymom]

You too bunnymom! X

[Hellyowl]

I noticed that the PPI can cause low magnesium and low magnesium can cause confusion. I started taking over the counter magnesium and the pred head got loads better. This is a non scientific study and I havn't discussed it with Doc.

[SheffieldJane]

Can ridiculous extravagance be put down to Prednisalone please? 🙄

[Slowdown in reply to SheffieldJane]

PMR + Pred + Patience-wearing-thin = kick up your heels (?) and break out the PLEASURES

[bunnymom in reply to SheffieldJane]

Yes and Christmas.

[blueisgreen in reply to SheffieldJane]

Do you mean you buy extravagantly while on prednisone? I do.

[SheffieldJane in reply to blueisgreen]

Yes I do. In the middle of the night, then the next day it’s like omg!

( Compiling my defence.) You see, I haven’t been well. 😉

[PMRpro Ambassador in reply to SheffieldJane]

There are people who say they spend wildly on tinterwebs when awake with high dose pred...

However - can't say I have ever been on high enough a dose to qualify.

[Jackoh]

For me it varies from day to day!! The other day talking to a friend ( known her for 40 odd years) couldn’t remember the names of her two sons!! Oh dear !

[SheffieldJane in reply to Jackoh]

Nominal amnesia. It’s so annoying - I can even blank out with my own family’s names. Inexplicable. I can’t discuss books and films because all my proper nouns fly out of the window.

[daworm]

Yup I get it still at 8mg...some bad lethargic foggy days for sure...