Inspired by Mark to update on progress:)

[JulieR2]

Hi everyone

Having read Marks brilliant post I thought I would updated on my progress and the long list of things I have bought or treated my PMR too! At this rate it will have cost me more than my sons!

The good news is I am down to 8mg of prednisolone! I had already purchased the pantethine, vitamin b complex vitamin A and Vitamin C so have been taking them. Not that I am advocating them but had them and so thought what the heck! I think if nothing else they may have had a placebo

I have lost 5 lbs but didn't do so well this week! Rewarded myself with wine and chocolate but back on the wagon now!!!

I continue with a fortnightly massage and am trying to walk as much as possible! But working full time gets in the way!

This week I joined Pilates the only good thing was the pain afterwards hid the aches and pains of PMR I have since found out that I may have enrolled in the intermediate class as there was a lot of time doing the PLANK or in my case lying on the floor!!!

I know that some people have problems doing the basics and when I was first diagnosed I could not even bend to put my socks or other essentials on

I sometimes wonder if I have PMR but then I get the lows of exhaustion and the stiffness in joints to remind! I hope I can be free of prednisolone by the end of the year! But I am aware that I am not in control and no matter what I buy to try and keep my PMR happy it can throw a tantrum at any time

But for those who are low I know from experience that knowing things will get better is helpful.

For those who have read my earlier posts I have still not taken my PMR and it's new bike out for a ride or allowed it to use the new picnic backpack I am keeping that as a treat for when it is really well behaved!

Hope everyone has a good weekend

[SheffieldJane]

Top tips! Julie 🌟

[Hidden]

Let's tell Mark he is a star second thoughts it might upset his Aunties

[markbenjamin57 in reply to Hidden]

Ohh, I'm blushing now. In any case, I blame You Lot for keeping putting me up to this Silliness (including the Aunties...)

[Zofitmogelijk]

Hi JulieR2, Good to read about your progress, Thanks for sharing. You made me laugh, the plank is definitely the reason why I changed to Taichi. There it is more about (my experience) concentration and working with energy and learn to accept boundaries. 😊

[JulieR2 in reply to Zofitmogelijk]

Thanks so much if it doesn't get better I will search for Taichi. As another gift for my PMR

[Hidden]

Hi JulieR2

On a more positive note, thanks for your progress report, it will surely inspire many of us. As I am of the male gender, do you have any male attendees at your pilates classes or is it a ladies acivity only. I know that over the last nearly three years my overall body strength has declined. Due to my stringent diet regime I am the same weight now as when I went on steroids but have chaged shape and lost stenght. So I need some form if exorcise to get back in shape.

Good luck on your journey and keep us informed.

Peter

[JulieR2 in reply to Hidden]

Hi Pete there were indeed gentlemen there which was really good! Both genders seemed to find it equally difficult I am going again this week and hoping it or I get better

Julie

[Hidden in reply to JulieR2]

Thanks Julie, please see my reply combined with ans to PMRpro ( I have no favorites, I love you all, including Mark, and before you ask, No, I am not that way inclined.

[markbenjamin57 in reply to Hidden]

Ah, bless Pete. So I suppose a date's out of the question then? (only joking..)

[Hidden in reply to markbenjamin57]

I do need someone to polish my car ! (only joking.... oh you etc)

[markbenjamin57 in reply to Hidden]

Now you're talking Pete! Did the 'limo' last week and it's looking like new :-). Shame we're not closer or I would gladly do the honours for you too - seriously

[Hidden in reply to markbenjamin57]

I'm working out how long it would take to get to WSM

Second thoughts my car will get dirty on the way back How long will it take you to get to Glasgow?

[markbenjamin57 in reply to Hidden]

Ha Pete! So, you're in Glasgow then?!

In the Limo: about 7 hours, traffic permitting. Flying from Bristol airport to Glasgow: the same (allowing for transfer times at each end). And then the return trip...

Nice idea, but maybe not the most efficient way to get a bit of car valeting done..?! ;-/

[Hidden in reply to markbenjamin57]

Yeah, but your an enthusiastic car valeter and you would do a fantastic job on my old banger. Anyway I don't live in Glasgow, I live in Cambridgeshire Just wondered how long it would take you to get to Glasgow

Second thought I'll polish it myself to see if I survive the activity. Last time I did it, the PMR shoulder pain kicked in and I regretted that I even started.

Happy days

[PMRpro Ambassador in reply to Hidden]

Polish a car? It's the muck that holds ours together!

It gets a full wash at the end of the winter to remove the salt. Little point the rest of the year - either snow or the dust has it back in as bad a state within a day or two...

[markbenjamin57 in reply to PMRpro]

Ohhh.. PMRpro, you should do it at least once every 3 months. I know about these things...

[PMRpro Ambassador in reply to markbenjamin57]

It is well over 8 years old - and when it is just washed looks like new apart from the couple of rather Italian scrapes on the bumpers. Not a touch of rust, original exhaust after well over 100,000 miles. I rest my case

[markbenjamin57 in reply to PMRpro]

Fair enough PMRpro.

Then again, I am rather fussy with my cars - and it gives me something to do at weekends when not messing around on the internet with You Lot

[Hidden in reply to PMRpro]

Ah. It's the good old Italian mud, good stuff that, holds everything together like glue I'm told

[markbenjamin57 in reply to Hidden]

Ha Pete!

Well, I remember doing a 'straight' trip from Glasgow to WSM in 7 hours a few years ago (in a very quick AMG Merc, with a couple of short stops in between): but with the speed cameras everywhere on the M/ways attemting it nowadays it would probably negate all of that - and also land me-up in front of the local Magistrates - or worse (!).

And, as a former Police Speed Awareness Course trainer, probably not a good idea..

Maybe best if you do the CLK panel-by-panel.. and take your time?

[Hidden in reply to markbenjamin57]

Yep, that's a sensible plan

Now can I ask you a serious question ? You have said and the others have agreed that your adrenal glands have come back into play I think you said when you reduced to 5mg you felt so much better.

If they have come back to play ? what reduction plan will you adopt from now. I ask that because I am at a similar stage and have been using the DSNS method from about 11mg. I now feel as if nothing is wrong with me apart from the fatigue and a very few twinges which is not so bad and I feel so much better.

[Hidden in reply to Hidden]

Ok, I've slept on it and decided a bit of trial an error might come into play. I can hear the Aunties now saying "keep to the DSNS. if lf worked up to now, keep doing it" So that's the plane, you can't beat experience. However if my adrenals should start to come into play, do I go half mg at time or 1mg at time ?

[PMRpro Ambassador in reply to Hidden]

You don't know if your adrenals are coming into play except by you reducing the dose slowly and you feeling well, in particular, not fatigued.

Every time you change your pred dose the entire HPA axis (hypothalamus/pituitary/adrenals) has to reset itself. If you change by a large amount you are more likely to feel the effects than if you reduce by very small amounts. That is the idea of DSNS - to allow you to reduce with as little disruption of daily life as possible.

[markbenjamin57 in reply to PMRpro]

Well explained PMRpro

[Hidden in reply to PMRpro]

Point taken, many thanks

[Hidden in reply to Hidden]

Thanks PMRpro, you're a gem compared to my Doc who I had a review with last week.

He said "now you are on a dose where your adrenals should start to take part (6mg) so reduce by 1mg a month from now on" I said I wanted to reduce by half (0.5)mg. he said OK but there is no need. He works by textbook I suppose?

Owing to the fact that I have had trouble reducing in the past, I shall stick to the DSNS method which has worked for me. If it takes another year on a safe dose, what's that compared to nearly 3 years I have been on pred already

By the way I am using the 4 week cycle i.e 1 day new dose 4 days old etc. (not 6 days) and see how I get on.

Thank again for your input PMRpro

[PMRpro Ambassador in reply to Hidden]

"There's no need" - says his crystal ball. He can't know - and if you have had difficulty reducing before, why should it suddenly be different now?

I'm a really nasty person - i hope all these twerps who work on the textbook theory develop at least PMR when they retire...

[Hidden in reply to PMRpro]

For " really nasty" read "really nice" I know flattery won't get me anywhere, but I can always try OH says I'm very trying

[PMRpro Ambassador in reply to Hidden]

I can try really hard too

[Hidden in reply to PMRpro]

[markbenjamin57 in reply to Hidden]

Hi Pete

Well, in view of the recent, quite dramatic let-up in symptoms, my rheumy has recommended an immediate drop to 4mgpd and further 1 mgpd reductions every 4 weeks unless 'relapse-related' symptoms return: in which case to extend the intervals to every 8 weeks. Interestingly, he does NOT advise staying on 5mgpd, whatever.

Of course, this conflicts with the usual best advice for tapering (e.g. DSNS) at any level: but it seems that I can perhaps tolerate this faster / steeper drop in my own context. As I write (at 4mgpd) I've had a little 'kickback' pain / stiffness / fatigue wise, but nothing like on the scale frequently experienced during the past 2 years.

So (to answer your question!), I'll cautiously carry on with the monthly 1 mgpd step-downs BUT also be ready to put the brakes on if any of the symptoms return with any degree of severity.

As always, I think steroid tapering rates and amounts should be considered in an individual's own health context, and very much led by Symptoms (or lack of..) / any comorbidities etc. But if, like me, you're feeling generally ok, you could try a slightly faster taper...?

It'll be interesting to hear from the Aunties on this one too

MB

[Hidden in reply to markbenjamin57]

Thanks Mark

Interesting what you Doc had to say. As I have said previously, I think your youngness has a lot to do with it. Compared to a lot of us, you have had quite a quick reduction ?

I think your comment about an "individual's own health context" is very important and true

Thanks again Mark

Pete

[markbenjamin57 in reply to Hidden]

No worry Pete, always a pleasure.

Sorry for the delay in replying, been full-on painting,decorating and shifting furniture today.

As for 'youngness'(!), well, yes, and I'm also fortunate to have always been fit and active - played squash well into my 50's and a general 'Action Man'. I'm a bit of a natural fidget - just can't sit still for long or do sedentary things very easily, and I enjoy 'doing' physical stuff that I enjoy, even if it tires me out. Maybe this has stood me in good stead with 'recovering' relatively well from PMR, for now at least? Fingers crossed...

For me at least, washing & valeting 3 of the family cars or doing a big DIY project is more fun than spending hours at a time on a fitness machine in a gym. The same amount of bending, stretching, lifting etc - and a result at the end? ;-).

But that's just me. We are all different, and in different ways...

That's it - wine open, nicely tired, and catching up with myself (and, of course, You Lot!) :-D. On, and Forwards... back soon.

MB

[Hidden in reply to markbenjamin57]

Well done Mark, I see what you mean by action man. I will write later, I think I can compete with some of your activity. We shall compare notes later

Pete

[PMRpro Ambassador in reply to Hidden]

I did Pilates for the first 5 years of PMR, the time without pred. It was what kept me upright and mobile in combo with aquafit and Bowen therapy! But you DO need to have it adapted a bit and (especially) start at the beginning! We had a large and mixed ability/level class but a brilliant teacher. It was mainly women and every so often new hunky blokes would appear (often rugby and cricket players) and you could see them looking down their noses at all these older ladies. Strangely though they rarely lasted more than a couple of sessions - because they collapsed and couldn't cope with the shame

[Hidden in reply to PMRpro]

Thanks JulieRD and PMRpro for your answers, and I don't know whether to laugh or cry. As I am a bit of a wimp and get embarrassed easily I would probably end up like the aforementioned hunky blokes and only last a couple of sessions I will have to think about this one and perhaps ask Mark B, he looks like a hunky bloke (that will get him going) However I am going to a local Hospital physiotherapy department for an assessment of what they think would be suitable for me. So I think it's a question of watch this space

Many thanks again guys (it's what my Australian daughter in-law calls my wife and I, apparently we are guys) where is this modern world going????

Keep smiling, Pete

[PMRpro Ambassador in reply to Hidden]

It helps when you know that while it all looks very innocuous, Pilates can be seriously heavy-duty stuff! So instead of going in with the attitude "I can I do this" you go in thinking "how can I do this". You start with the lowest level and just a few reps - and concentrate on doing it properly 5 times rather than not properly 20 times...

[Hidden in reply to PMRpro]

That funny, that's what my wife said last night ! I said " don't forget that I am 73 this month, you just have to go gentle with me !

[markbenjamin57 in reply to PMRpro]

I always stick to my early morning fitness regime of 100 press-ups. 50 with the left eyelid, then 50 with the right.

[Klah in reply to markbenjamin57]

Reminds me of the man who named his dog "Five Miles"just so he could say he walked five miles every day!😊

[markbenjamin57 in reply to Klah]

Lovely!

[PMRpro Ambassador in reply to markbenjamin57]

And then you consider getting out of bed...

[markbenjamin57 in reply to PMRpro]

Steady on now PMRpro, one thing at a time

[Klah in reply to PMRpro]

You have reminded me, PMRpro, the fact that you were in the Pilates class at all is why others can look at PMR people and think we LOOK fine, what's the problem?! Real empathy comes from this forum😊 congrats to all the Pilates folks tho...too strenuous!...I do yoga.

[HeronNS in reply to Klah]

There are apparently several kinds of pilates, and some can be done by PMR patients. Just need to find the right one. Same is true of yoga and even tai chi. I haven't tried pilates myself, got too many other physical activities to feel need to add yet another!

[PMRpro Ambassador in reply to Klah]

The secret of Pilates is to do it at YOUR level - you will get to a higher one but it is never a competition to do the same as the person on the next mat. Worked at properly it isn't that strenuous - if it is, you are trying to do too much.

[Hidden in reply to PMRpro]

I agree with your coments PMR pro. After a long period of inactivity the body will obviously complain with such activity one would be foolish to attempt any demanding activity such that pilates demands. Your suggestions for a gentle commencement are taken with understanding

[markbenjamin57 in reply to Hidden]

Nice one Pete :-). Actually, I'm not really tall - I've just got a long face...

[markbenjamin57 in reply to Hidden]

Get it right Pete - it's 'GUYZ!!', preferably shouted with intensity and fierce enthusiasm to anyone, whether a relative or not. The American Corporate GUYZ have the salutation well-honed, and it's alive and kicking here too (for better or worse...)

[Hidden in reply to markbenjamin57]

I told you before, I'm an old man and can't keep up. (well I can really, but it's nice when young ladies help me over the road)

[markbenjamin57 in reply to Hidden]

Nice one! I can see you standing there whimpering anxiously with your top lip quivering (I do that, it works every time!)

[Hidden in reply to markbenjamin57]

Sorry you obviously took me seriously (only kidding) I don't really do that, but its a wicked thought

As I am feeling better (well it might be temporary) I must get back to my flying lessons, now where did I put that weed ?

[Hidden in reply to Hidden]

This is getting silly. I must regain my senses.

[PMRpro Ambassador in reply to Hidden]

Why??????? Nothing wrong with a bit of escapism...

[Hidden in reply to PMRpro]

[PMRpro Ambassador in reply to markbenjamin57]

Mostly worse one feels...

[markbenjamin57 in reply to PMRpro]

Will be even worse if / when the UK's HMRC start using the term 'You Guyz' in their letters to tax payers 'customers' !

[Marcy47]

After 2 years of PMR, just started reduction to 9.5 Pred, I am attempting a small amount of gardening to see how the old body copes with it. Just doing half an hour to begin with, weeding the borders and dead-heading. It's very easy to get carried away so I set the alarm on my phone, or I would be out there for hours. When we bought the place 2 yrs ago I told OH the garden was too big, PMR had just attacked me then. I was over-ruled as the view was so great, so who's complaining now about all the gardening!!

[PMRpro Ambassador in reply to Marcy47]

I have a great view of mountains - no garden!

I saw my mother struggle with the garden she so insistently wanted. I swore I wasn't falling into that trap. Especially since OH doesn't know one end of a hoe from t'other...

Suppose it depends where you are - but there is great demand for allotments which are hard to come by. Finding a like-minded person who would take some of the strain might work?

[Marcy47]

My next-door neighbour is a widow in her 80's, she has a gardener in once a fortnight to keep her garden tidy, it's not as big as ours, but I may go down that route until PMR leaves me alone. OH can manage to cut the 2 lawns, and he's been out there today hacking away at bushes that he found some bugs on. Checked on the web and they seem to be Harlequin ladybirds, an invasive species in UK, which we had to report and send photos of. We also have 2 apple trees, so lots of apple pies, (that are bad for my weight problem)! A stall on the pavement giving apples away?

[Hidden]

Hi JulieR2 Well done you. Reading your post is like i had written it....i was diagnosed in feb 2014 with PMR 5 weeks before my sons wedding in vegas and really thought i would not get there. After lots of ups and downs with trying different doses of prednesolone i gradually came of it my gp was brill. I have now been off it 5 months only now and again my shoulder joints get sore but that is when i have done different exercise or over done things

I take high dose ginger tablets as they help inflamation i do yoga have a yoga(thai) massage once a month and i am now walking 5 times a week to work and back. I will try amything to make myself well again. I am even back running once a week. The best thing was rejoining slimming world and changing my eating habits i eat so much fruit and veg and have lost 10lbs and have 10 to go. My GP had my blood checked last week and all is normal and my Rheumatolgist has said he doesnt need to see me again. My friend was diagnosed with PMR 18 months ago and was inspired by your posts and asked me if i had read them...that is how i came to read them

GOOD LUCK you will get there. Xxxx

[JulieR2 in reply to Hidden]

Thanks so much it's lovely to hear really good news! Now just need my debit card for those high dose ginger tablets! They are a new one on me

[Hidden in reply to JulieR2]

My osteopath suggested the ginger tablets (her sister is a scientist and checked them out 😊😊😊)i get mine from natures best . Signed up for catalogue and got £3 off voucher.

Xx

[JulieR2 in reply to Hidden]

Thanks will look them up