The Lighter Side: Good News. MB's PMR / Pred Paradox no. 86 Resolved - with thanks to You Lot ;-)

[markbenjamin57]

Greetings All

Good News: thanks to the many of you responded to my recent Post about transient Dizziness and offered various thoughts about the cause, including BPV (Benign Positional Vertigo), I'm delighted to say that you were RIGHT! :-).

But just to check things out with a Medic (as is always wise), I spoke with my very helpful GP on the phone today about it. He agreed that it's probably BPV, caused by either muscle tension in the neck or a touch of Viral Labyrinthitis - which is usually self-limiting.

I also mentioned that I spend a lot of time at my PC (Often writing to YOU LOT) and, after he stopped giggling, reminded me that it's a good idea to have regular breaks from sitting at a computer doing whatever since it can be tempting to (q) 'just write a bit more / look for something else'. A very good point... Note to self: set a reminder alarm to STOP every hour and stretch, have a break and do something Physical like Us Humans are designed for!

Now, hear this: My GP also was generally supportive of the idea of doing some Homework about such things on the Internet and wasn't at-all defensive when I said I'd looked-up the symptoms and causes of BPV. That said, he gently mentioned that not all medical advice on the internet is reliable (but I guess we all know that).

And (very interesting..), in his experience of PMR Patients, there are often cases which last just a few months and clear-up relatively quickly without relapse: and that Internet Health Forums tend to be populated by longer-term sufferers. Maybe that explains why we don't always hear from short-term and / or younger PMR Patients here, for all sorts of reasons? Who can know about the other, un-publicised side of the PMR coin..?

Finally: he reminded me that, even when feeling much better (as I am now - PMR symptoms virtually absent for 2 weeks - Yay!), NOT to go out and over-do things and (q) 'PACE my activity'. In all, a Great GP, and I wish I could clone him and send some of You Lot a copy. He's Defo getting a complimentary copy of my silly book in appreciation of treating me like a Grown-up (as if.. ha ha) and listening to me without judgement.

So: that's it. I'm off to clean the Limo (for the third time this week - ha ha), stretch my legs, get some fresh air and take Tedski for a long walk on the beach (but all at a gentle pace of course).

But, before that, a big THANK YOU to all here for your interest, support and thoughts - as always. I feel a tear running down my cheek as I write.... Oh, sorry, I think it's from when I washed my barnet earlier and didn't dry it properly. Oh well..

Keep smiling on the Journey

'Uncle' MB

[allykat]

Was wondering how things were. Pleased it has been resolved.

[markbenjamin57 in reply to allykat]

Thanks kat. Next..?!

[Longtimer]

Lovely news...such a shame GP's like yours are so rare.........enjoy your walk with Tedski😀

[markbenjamin57 in reply to Longtimer]

Yep, never met him (this GP) before but very helpful and chatty.

[yogabonnie]

Hooray. I have had that..and I do do the exercises I found on youtube and it clears up quickly! Had it a couple times. scary!! So glad it is resolved! Still, keep pumping those feet when you wake up..before you get up.

[markbenjamin57 in reply to yogabonnie]

Thanks bonnie. Actually, I know when the adrenals / general maladies etc are sorting themselves out because I sit here (at the PC) and find my legs 'bouncing' up and down on the balls of my feet as if they want to have a good run. Tempting... since I haven't run at all for 3 years. And the last time (early on my PMR Journey, and high on the Preds), I tried to run a short distance and strained my achilles tendon. Ouch!

[Pat9442]

Did he do the “throw yourself backwards” trick? Worked a treat for me - even though I nearly slid off the couch!

[markbenjamin57 in reply to Pat9442]

No Pat, but I might try it tonight after a glass or two of the Red Stuff..

[jinasc]

Mark,

Love it, you actually knew that deep down...........but when you are interested in what you are doing you need a prompt...............my first computer was a Merlin (old-computers.com/museum/ph.... Before you ask, yes I am that old.

So do take note of the "Note to self: set a reminder alarm to STOP every hour and stretch, have a break and do something Physical like Us Humans are designed for!"🤹‍♀️

You can even use the timer on your oven, if you know where the cooker is of course, 🤔

Advice given previously about 100 years ago, whenever typewriters where first unleashed on public - so it does bear repeating and often.

Origins of advice, probably by an old wife's tale too many centuries ago was 'Never stand, when you can sit, never sit when you can lie down'.

So always change your position every hour, whenever possible and if on a long car drive, even just wiggling your feet or scrunching you hands, helps your circulation moving and so does breathing deep. If you are at any meeting and the Chair does not stop every hour and say everybody move..........avoid those meetings like the plague.

OK cinemas, concert halls etc can be problematic, just remember when you do get up, wiggle everything before you try to walk, the circulation needs to be given a chance to get up to speed.

PS I wished I could bottle my GP and Consultant and dish them out to everybody,,,,,,,,pity we have not learnt how to clone the goodies. 😉

[markbenjamin57 in reply to jinasc]

Thanks jinasc - very true

[PMRpro Ambassador in reply to jinasc]

Funny how the baddies seem to self-propagate...

[Hidden in reply to PMRpro]

I know what you mean, as you have remarked I've just seen one.

[Constance13 in reply to jinasc]

I can’t remember the last time I “wiggled”. “Woggled” perhaps.😀

[scats]

Interesting about PMR only lasting a few months.

My father had it for the last years of his life, never improved. My brother has had it for at least 6 years. He would rather trust his doctor than find out for himself. Then there's me about to reach 3 years and only just reached 11mg. I'm the only one on the Internet for education.

The times I've heard..." Oh my auntie/mother/neighbour has had that for years"

I get his point that longer term patients are more likely to be on a forum, but you don't have to read many post to realise that most of Us Lot will research before going to the doctor about anything. I think it's more a mental attitude.

Perhaps that's our problem.

[markbenjamin57 in reply to scats]

Yes scats. And I think PMRro (?) has mentioned here that there could be different strains of PMR with differing characteristics (e.g. duration / nature of symptoms etc). And, of course, there is the question of the Patient's individual context (e.g. age, gender, ethnicity etc etc and any co-morbidities that might conspire to exacerbate PMR symptoms and / or lengthen its duration. A real catch-22 Research-wise?

Trouble is, without more research it could be a long time before these possibilities are explored, if ever?

[PMRpro Ambassador in reply to markbenjamin57]

Just scroll down the page a bit!

[markbenjamin57 in reply to PMRpro]

Just did..

[PMRpro Ambassador]

He may think we are a concentration of longterm sufferers - but when people join they cannot know they are going to short or long term patients. In the nearly 10 years I have been on the forums I think I have met only a very small number of people who were off pred in months - most do tell us! They come within a few months of developing symptoms/being put on pred. And stay until they are at a low dose more often than not.

Nor does his theory match up to this work from top PMR experts:

practicalpainmanagement.com...

medpagetoday.com/rheumatolo...

who found "Only 19% of patients discontinued glucocorticoids by 1 year after the onset of PMR, 37% discontinued by 2 years, and 50% discontinued by 5 years. Only 58% discontinued glucocorticoid use by 10 years after disease onset. At 10 years, however, at least 97% of patients reached a glucocorticoid dose of <5 mg for 6 months."

He must also remember that (LO)RA and PMR can - and do - present almost identically. One form of inflammatory arthritis is reactive, it usually responds to pred - and that DOES resolve within about 6 months or so. And top rheumies are of the opinion that probably as many as 60% of GP-diagnosed cases of PMR are not in fact PMR - which may be an overestimate but it is definitely quite a few (and the reason many believe all cases should be seen at least once by a rheumy).

However - there is a train of thought that PMR is not just one disorder - it comes in short, medium, long and very long versions, i.e. at least 4 potentially different disorders, the common thread being they are all responsive to moderate doses of pred. I think that the people for whom mtx makes a significant difference don't have the basic version of PMR.

[markbenjamin57 in reply to PMRpro]

Interesting... didn't have time to ask him exactly how many PMR patients he has seen over the years. I suspect relatively few compared with the number here?!

[markbenjamin57 in reply to markbenjamin57]

...different Versions of PMR? Maybe..

GTI: short and fast

Blue Efficiency: always Bl**dy stopping and starting again

Family: everyone can benefit

Turbo: gives a real Punch

Stretched Limo: can't see the end

HGV: very long, heavy and difficult to handle

[PMRpro Ambassador in reply to markbenjamin57]

Haha

And yes - the average GP doesn't see that many PMR patients regularly if the current state of most GP practices is anything to go by. Would they realise the ratio?

[markbenjamin57 in reply to PMRpro]

Yep, a lot probably throw in the towel and never show-up because they can't even get through on the phone to make an appointment - let alone drag themselves down to the surgery to attend in person... Not that I'm cynical...

[PMRpro Ambassador in reply to markbenjamin57]

No, not at all, No more than me...

[scats in reply to PMRpro]

I knew you would have a much more informed reply, but I had to say something, my button was pushed!

[markbenjamin57 in reply to scats]

GPs vs. Us Lot? Ok, there's only one way to resolve these differences of opinion. FFIIIGGGHHHHTTT!!!

[scats in reply to markbenjamin57]

You first!

[PMRpro Ambassador in reply to scats]

Mine too - glad he isn't mine...

[Hidden]

Well Mark, all I can say is something boring like ... that was a good outcome then 🤗

[markbenjamin57 in reply to Hidden]

Well Pete, I think (hope) the dizziness was just a Blip. I looked back in my diary today: only a couple of weeks ago I had a couple of days of the DF even whilst at a steady 3mgpd Pred. But suddenly, almost complete relief from all PMR symptoms - and continuing.

It really does make you wonder if, even when you do all of the 'right' things (e.g. sensible tapering, pacing etc), ultimately, PMR subsiding and / or the Adrenals firing-up follow a mysterious course of their own. Either way: when the symptoms lift, it is quite a dramatic difference - like Night and Day.

Fingers crossed... now at 2mgpd (straight down from 3 in typical MB Gung-Ho fashion) and still no kick back at all. If anything, feeling even better (like in similar circumstances before..).

All I can say is Hang On In There..

[Rose54]

Health and Safety

Work Station Assessment

Just did mine today

[markbenjamin57 in reply to Rose54]

I work for myself from home, so I think I'll have to do my own. Now, where's the marking sheet and clipboard..?

[Rose54 in reply to markbenjamin57]

I had to do my own

E Learning

Health and Safety be wear

Ears phones in to listen

Stand up and adjust you chair

Nearly strangled myself ,thay should have informed me to remove ear phones

[markbenjamin57 in reply to Rose54]

Lovely!

[Constance13]

“ barnet” - I wonder how many will understand that?!!

[markbenjamin57 in reply to Constance13]

'Barnet - as in Barnet Fair'. That'll send our International PMR / GCA Friends into a complete spin (sorry you US / Canada / Ozzy / NZ / Mainland Europe Lot) !

[PMRpro Ambassador in reply to markbenjamin57]

Excuse me Sir - this mainland Europe person knows what a barnet is...

[markbenjamin57 in reply to PMRpro]

but you know who I mean PMRpro - i.e. NON-Native English speakers

[PMRpro Ambassador in reply to markbenjamin57]

Fair nuff...

[markbenjamin57 in reply to PMRpro]

Keep up please PMRpro..

[PMRpro Ambassador in reply to markbenjamin57]

At least I know what day of the week it is...

[markbenjamin57 in reply to PMRpro]

I'm glad someone around here does...

[Grants148]

So pleased you are ok now Mark,l wish my GP were as great as yours,mine is still expecting me to lower my steroid dose ,but l find that just l mg reduction gives the PMR a message to flare up again.l am reasonably OK on just 3 mg and even trying to reduce by I/2 mg is not good and l end up having to increase my dose to 4 mg. the next day.Oh well, l intend to have a word with him about it.l envy you your walks by the sea,all that lovely fresh air,there is a recycling plant not far from here and there is often a very unpleasant ‘pong’ wafting around,rather like living next to a dustbin lorry! Needless to say l have complained to the council but nothing has been done about it.lt is enough to make me want to move house.Tedski would certainly not be amused as l get the impression he likes the finer things in life.All the best Mark,sorry for rambling on a bit......take care not to overdo things and enjoy the walks with Tedski.

[markbenjamin57 in reply to Grants148]

Thanks Grants Yep, I'm fortunate with my current GP but I've had bad experiences in the past with others, like many of Us Lot.

It's nice living by the seaside. In view of your local recycling plant problem, have you considered relocating to somewhere that's less 'offactorilly' (if that's a proper word) invasive?

No worry about the ramblings - I do it all the time

Try to enjoy your weekend

MB

[Mikb]

"Barnet". Another word to look up and tuck away. 🙃

[markbenjamin57]

Mik, just Google the term 'Barnet' etc and all will be revealed about this and other usages of Cockney rhyming Slang

[Theziggy]

Are you off the steroids then?

[Grants148]

Hi Mark,would love to relocate,not sure though that l have enough energy now,but l shall keep looking for a nice place with fresh air and more countryside and hope to recover from the PMR fatigue.l spent some time in Grantchester Cambridge yesterday,one of my favourite childhood haunts,it has such a lovely tranquil atmosphere and of course fresh air.Alas a property there is far too expensive ! Have a lovely weekend with that bear,l suppose he will want to be with Olga though,you had better hide the keys to the car.