will it ever go?

Hi Felinefan,

Welcome!

I found your post interesting in that I have been wondering what actually can happen with the dose over a longer time. I was undiagnosed for about 5 years and now have about 15 months on steroids under my belt. I got down from 15mg per day to 15 mg every second day with no real difficulty other than maybe a too ambitious timetable at times and then down to 13.5mg/2 days. Over the last couple of months I've had to creep back up to 17.5mg/2 days which I've felt quite disappointed at but your post makes me feel rather less so. Most of the others here seem to be at a slightly lower dose after that long - as you have been down to, unlike me.

You say you are a fitness teacher but not how old you are. I was quite young when it started (early 50s) which was the main excuse for non-diagnosis. It was the effect on my gym classes that was most apparent and step had to be dispensed with and eventually it was aqua aerobics and little else except Pilates and Iyengha yoga which I forced myself to do after an aqua class when I could finally move! They all helped a lot - as does skiing (bizarrely) in the winter. Now living in northern Italy only the skiing is left as there aren't classes here for the other stuff which are affordable to do every day (you're looking at between 4 and 8 pounds per class plus pool entry and no gyms with pools) so summer is a problem as although walking does help I find it exceptionally painful on feet and lower back - the main points of attack of the PMR! I also find paracetamol no help at all, ibuprofen is better though only takes the edge off the pain in my feet. I assume that is because it is an anti-inflammatory.

As for the \"it'll disappear\" - I've said a couple of times here, I don't think it's the PMR that disappears but the patients! I'm certain that's the reason there are relatively few young patients with it - we are told we are too young, it's all in the mind, hysteria, depression, whatever, until we give up going to the doctor and suffer alone, finding other ways of coping. On the other hand - do you think maybe we now have higher expectations of what we can do at our age? I'm just thinking of my mother's generation at my age now.

Do keep in touch,

EileenH

Hello there

I also got to 4mg last Dec after 15mths on steroids then by mid Jan I was back to 15mg !!!!!!! I have now fought my way back and have been on 5mg for a few weeks now and only took 1mg extra when I was travelling on hoilday there and back I am now contemplating the next reduction but not sure if it will work

I was very down at the beginning of the year but now am trying to be more relaxed about it With my first bout of PMR I was down to 1mg within a year and off steroids within 2 years never had to increase and was pain free for 3-4 years till it all came back I too take a couple of paracetamols if for instance I am doing a lot say early in the day

I unfortunately had to give up all my exercise at the beginning of the year because I kept pulling muscles and my only exercise has been gardening looking after my horses and land and walking but tomorrow I start a muscel rehabilitation class !!! So I hope eventually to get back to more exercise later I am generally feeling more active now So I keep my fingers crossed

As to when it goes......... there is no answer My 2 bouts have been totally different and the more you read on here the more you realise how different we all are I do know people who had it and it just went and didnt come back so it is possible and I hope that when mine goes ( fingers crossed !!) it wont bother to return

Best wishes to all on the forum

PS I had a fabulous holiday in Rhodes and swam in the sea at least 4 times a day and wonder if I could have a prescription for that for the winter Sunshine !!

Mrs G

Mrs G,

It was great to read that you were able to swim 4 times a day in Rhodes . I am off on holidays on 10th November, but at present my shoulders are so stiff at times that I wonder if I will be able to swim at all let alone snorkle, which I love.

However, I have come up with a cunning plan :!: . I shall AT ALL TIMES WEAR A LIFE VEST, and should I get into difficulties, my dear husband can just attach me to a fishing line and reel me back in to shallow water :lol: .....the mind boggles !!!

This is such a frustrating illness-no time lines, no consistency & precious little knowledge on the part of many professionals :cry: .I read a bit on one of our university research sites recently from a doctor doing investigations into using fibrinogen levels as a marker for PMR. Her spiel started by declaring that PMR was an illness affecting \"elderly\" patients. I immediately shot off an e-mail stating that at 51 I did not consider myself to be \"elderly\".Surprize...I'm still waiting for a reply :shock: .

Best wishes to all....just as well we have each other to see the real side of this.

Pauline.

Hi all!

Pauline - you may have a cunning plan but do make sure your husband hasn't got one too and that your life insurance isn't a very tempting item :wink: :lol: !!!

Maybe all of us under 60 should get the email address of this person so we could show her how many of us there are. (Not, by the way, that I am suggesting that 60 is old but you don't usually get considered for PMR much younger.)

EileenH

Hi Eileen.....but who else would cook his favourite foods, do the garden and the ironing and make sure his male ego stayed intact ?:lol:.

I would dearly love to be able to pass the researchers e-mail to you, but I think it would probably get blocked--and it is just yet another example of how even the professionals can be badly mis-informed :cry: .

That is where the UK pmr website has really come into its own as a support to all of us (elderly or otherwise), as indeed has this forum.....we are the people who know the reality of living with a chronic illness and the limitations it places on daily living .

We are the ones who know that one day everything can be honky-dory & we feel like we could climb Everest, only to be hit by a totally debillitating fatigue the next. :cry:.

But such is life with PMR...and slowly but surely we all learn to accept it and cope as best we can :roll: .

best wishes, Pauline.