Culprit- Steroids or PMR ?

Hello Everybody, Having spoken at length with a GP last week who seemed more clued up than some made me come up with some alternatives.

!. We, as we get older, collect all sorts of aches and pains, apart from PMR. Steroids help these too.

But when we finally come off steroids we are still left with these original aches and pains. But we don't know at that point whether it is the steroids causing the aches or whether we still have PMR.

2. Might our PMR have burnt itself out before we finish taking the steroids? The blood tests don't seem definitive - so how do we know? BUT we might still have aches and pains from other causes or the steroids.

I don't know whether this is just sounding gobbledy gook. But what I am trying to say is that 3 things might cause discomfort and pain, and it's not always easy to know which is which. Or even if it's steroid withdrawal symptoms which I've also heard people talking about. So how do we know when PMR has finally gone? Or has PMR started to effect my thought processes - not that they were ever that great!

Green granny

Hi Green Granny,

Your post was so beautifully confusing that I understood exactly what you were trying to say and it made total and absolute sense to me. What a joy!! Today I almost have a brain and its magic - yesterday it was absent - how can this be? Thank goodness we're not alone in this and I think your GP has hit the nail on the head. We went into this PMR journey with a few aches and pains already in existence so we're not going to emerge, 2 or 3 years later (and 2 or 3 years older!) without any, well that's my theory anyway. Keep well.

Lizzie Ellen

Hi Green granny! I found your post just as lucid as many scientific papers I've read. I'm beginning to suspect there is a high degree of coincidence - I posted somewhere else earlier on today saying I have had something unidentified since I was in my late 20s which ticks almost all of the boxes for ME (used to be known as yuppy flu)/chronic fatigue syndrome which wasn't taken seriously in those days. It came and went and I got used to being careful not to overdo it. When what has been diagnosed as most probably PMR (on the duck hypothesis: if it looks like a duck, walks like a duck and quacks like a duck - it probably is a duck) started 5 yers ago it had a lot of things in common with what has been going on for nearly 30 years, just it was worse and didn't go away as much. When it became severe last year after a very stressful couple of weeks, it responded within 24 hours to steriods - I can now function almost properly again.

The \"it usually burns out in 2 years\" theory may well be because many people never get properly diagnosed with PMR in the first place, become fed up at their GP not taking them seriously and stop questioning what is wrong with them and/or put it down to advancing age. I'm positive it is far more common than is claimed and appears in much younger people but in a slightly different form. And since we usually have to taper the dose so slowly to avoid an adrenal crisis, yes, we may well have missed the point at which we went into remission - and the remission phases may be of varying lengths, so we may or may not experience a recurrence or flare up.

I'm starting to work out a whole series of questions about it which involve things that may affect the course of both the disease and the \"treatment\" as it is currently: purely symptomatic. I doubt I'll get them answered. But I think we all have to bear in mind that there are a lot of diseases for which there is no confirmed \"cure\" and living with them requires longterm management of signs and symptoms. We are by no means the only \"chronic sick\" group who are on very longterm steroids. We should probably be grateful that we do at least have some likelihood of getting off them at some point, or at least down to a very low dose and we are (in fairness) at a later stage of our lives than many who might face 40 or 50 years of taking steroids.

Perhaps a fair motto for us might be \"This too shall pass\"! We can only hope! And I can only hope this makes sense to all of you.

mrs k,

I am so glad that you reduced the steroids to 5 mg :D

Hopefully you will manage to further reduce this to 1 without any problem.

Looking forward to meeting you all on the 11th, can't wait.

MsK

Hi Eileen and Lizzie Ellen, Thanks for the reassurance that I am making some sort of sense to some people! I guess a lot more people are living longer so more people get diagnosed with PMR. And when we've all been moaning about bad weather making us feel worse it sounds like all those characters in historical books etc complaining about their \"rheumatics\" and wet weather etc., and probably just taking to their rocking chairs and giving up. Well, I guess we all feel like that from time to time but what I get from this site is that people are not willing to do that - they want their health and energy back and are very proactive about finding ways to try and do just that, whether on steroids or not! Maybe we are all too dependent on the medical profession too, and have too high expectations. So many of us, whatever our age, seem to have been very fit in the past, and so it comes as quite a shock to have to cope with this weird illness (even if it has been diagnosed properly), where everyone seems to be slightly different.

Oh well, that's today's great thought! Having had to go back up to 15mg in Jan. , just where I was a year ago, I am now trying to come down to 12.5 mg. whilst not getting to excited by a bit of sunshine and doing too much!

Here's to more dry weather - and, hopefully a bit more warmth.

Green granny

Hi Green Granny

Yes I understand you completely as well !! I was only 54 when I first had PMR and will be 62 in a couple of weeks so have to expect a few more aches and pains !! But I do think Oh thats the PMR Beofre Xmas I kept getting muscle strains in my calf and behind my knee but it was only one knee not both and was probably to do with a pull doing Aerobics I had a real problem getting down stairs It did get a lot better but now of course I like you went back to 15mg ( from 4mg in Dec ) I dont feel any aches and pains but they could all be there masked by the steroids !! I was well behaved and obeyed my Dr and didnt start my 12.5 until Monday as she said make sure you feel good for a week before you change as I had overdone it the previous weekend So far so good and I have tried to rest a bit this week The better weather has helped and I spent some time with my horses yesterday giving them a spring trim up which I havent felt like doing recently so that was nice I wish my old horse (33) could talk as she has been very very lively since I have had her on a antiinflamatory pain killer every day !! I wish I was as lively Anyway hope your reduction is going as planned My new motto is not to be impatient with the reductions and go with the flow as I really did expect it to disappear in 2 years like last time but its certainly not doing that this time !! Best wishes Mrs G

Hi Mrs G,

Perhaps we should all make an appointment with our local Vet :lol: Your old horse (I'm guessing 33 is old for a horse?) sounds very happy with her treatment. Good luck with your reduction to 12.5mgs. I went down to 10mgs on Monday and feel great at the moment - I'm having a quiet week (also known as 'being lazy' any excuse will do).

Lizzie Ellen

Hi Lizzie Ellen Yes 33 is very old for a horse Early 20s is normal And I have long thought a Vet would be fine for looking after me !! Magnotherapy for relief of joint pain was started on horses Also 20 years ago my horses were given probiotics after antibiotics to build up natural immunity again long before it became quite normal for us to all have probiotic drinks A retired Dr also used to call at the stables where my horses were kept a long time ago and get anti inflamatories of the owner to treat his Arthritis !! ( He obviously knew what dose to take ) Good luck with your 10mg I keep thinking do I feel as good as I did on 15mg ! I think I do !!