Update - PMR or Old Back Pain? - Useful information gleaned from old discussions

Oh dear, that's a difficult one. I think you have to remember that we are all different and perhaps the colleague's mother may have been retired. You will find, on this forum alone, that people will experience different levels of reaction to PMR. Some will be virtually housebound while others are 'bouncing' along and every degree in between. Do not allow this seemingly dominant person to dictate how you will be feeling. If necessary you can bring in extracts from some of the papers which are around. Perhaps Eileen can guide you on this and refer you to 'the spoons' which is very helpful. It's more difficult when we are below par to confront someone like that who can undermine what you have told your colleagues. Use this site to sound off and to give advice on how to tackle this if it becomes a problem. Best wishes.

Thank you, Silver49. I'm hoping it won't become an issue, mainly because I'm feeling so much better now. But it's good to know that there are always such supportive and knowledgeable people on here.

I have seen Eileen's link to the spoons theory - she pointed me in that direction very early on. There is just *so much* useful info on here - thank you, all! 

My husband told me I was like the energizer bunny for the first few months after I started pred.  This was, I believe, because I was so happy I could do everything I used to again.  However as my dose tapered I was struck with fatigue and increasing muscle weakness, so within six months I was no longer an energizer bunny, and in the two and a half years since I have never been so again.  Perhaps your co worker's mother was on a relatively high dose for much longer than I was, and may also have been a stronger more vigorous person to begin with.  We are all different.  I hope that your journey goes as well as it can. And find a few co workers with whom you can share how you feel, get at least a couple of them on your side.

Hopefully, it will be ok at work. I have been retired more than 10 years but, coincidentally, I had a colleague who was younger than me who had PMR and Fibromyalgia. As a team, we supported her and covered for her until finally we assisted her to take early retirement as she became more ill with other health issues. I had no idea until PMR hit me how she was coping and only then realised how difficult it must have been for her as she had so much more to contend with. Thankfully, I supported her as did other colleagues. We only know the road WE travel. I hope you have supportive colleagues. 

How right you are - we are all different, and this illness and its medications affect us all differently.  

The thought of PMR while still at work makes me ache. How does anyone do it.

Re your critical colleague... my mother used to say that other people's troubles are always easier to bear. That's not always true in my opinion but you get the gist.

I'm beginning to realise that I'm very fortunate in that I was diagnosed quickly, and the pred really has helped in terms of pain (I still had some niggling pain in my hands but that has gone now - possibly since I started taking CBD oil). I don't feel tired any more, apart from the occasional spell. The only thing that bothers me now is a brain fog. So, all in all, going to work isn't too onerous for me now. But I do realise that I have a long way to go yet, and my situation could change very quickly. I'll hopefully be starting to reduce my pred next week, so I shouldn't count my chickens...! 

I think the lady on speed must have been on high dose pred for too long!! Because that is the only reason anyone with PMR would appear like that.

That's exactly what I thought because I only felt like that at the very beginning on 20mgs. My GP said he hadn't forewarned me as it apparently doesn't happen to everyone.

I never ever felt like that! Sometimes I think it would be nice for a while!!!!

It didn't last as I think I was over medicated. 15mgs would have been enough and I didn't like the feeling of being hyper.

That is interesting Danrower.  I come from a family of heavy drinkers, I am the only one who doesn't drink, and the only one with an inflammatory condition!!! I don't think I will jump on the wagon though, there are a lot of down sides.

My back problem began as an injury as a child and between 1980 and 90 I underwent 3 operations and various other invasive procedures. The resulting scar tissues causes problems now and then.  I was wondering if reducing the pred was affecting it.  At first the doctor put me on 30mg a day for 7 days, probably to test if it was PMR, and during that time I had no pain anywhere. 

It is hard to know quite what to do.  The last pain specialist I saw looked at my MRI scan in dismay! 

Up to 3 weeks ago I was doing OK.  Just got carried away with an exercise and bang.  It is improving though, just very slowly and I have learnt my lesson.!!

How are you? 

serrapeptase reduces/removes scar tissue -- cannot use if have had certain medical procedures that use fibers or webbing or something to hold things in place

Thanks. I did look at this after you had mentioned in a previous post.  I just can't work out if it is OK to take it with pred.

Thanks for asking.

Well....here I am at 68 and supposed to be 18.

I think my autoimmune is resident passenger, but I'm off pred now. I tried very low dose: 1 to 3 mg with the idea that it will stem the full spirial up of PMR symptoms. 

I have Osteo, and a history of ortho injuries from American football ( the stupidest sport for young bodies) and was just told that I need a knee replacement. No more fixes. So I'll wait the hurricane season to pass (I live in florida, on water), and probably get it done in the fall or winter.

Existentially, this PMR has helped me reckon with the specter of age and diminishment. Like Eileen, I'm a realist, and prefer the truth over illusion.

I have disk problems, lower back, and it significantly exacerbates when I inflame, and feels much better in remission. That's why I responded to your thread.

Did you say your age?

Ah, when we are young we think we are immortal, do what the young do and suffer the consequences in later life. I remember being told by 'old people's that I would pay the price when I was older. Didn't listen but now I know. Still better to have enjoyed a youth and not been a wimp..... I think. 

'old people'

I am 71 and probably a realist as well!! I certainly like to know!

As you suggest, I think all this pain I am having must be to do with the PMR. It was fine when I was on the higher doses of pred but since I reduced from 10mg  to 9mg it has been a real pain (sorry)

I hope I can find a way of dealing with it as obviously I can't stay on high doses of pred all my life.

It seems a shame that you have to suffer for an active youth, it's like rugby here ( North England)

some kids get horrible injuries, not just cuts and bruises.

All it is telling you is that for the moment you need 10mg - go back, wait a couple of months and try again.

You are never reducing relentlessly to zero. you are looking for the lowest dose that manages your symptoms as well as the starting dose did. It doesn't mean you won't get lower - just not jsut yet. 

Pred has cured nothing - it is managing the daily dose of new inflammation due to inflammatory substances shed in the body each morning. Over time they will reduce and you will need less pred to mop up their effect. But in the early stages you will need rather more than you will need later. You won't need to stay on high doses of pred all your life - this is just a passing phase. But patience is the key. If you rush you will just develop a flare of the symptoms and end up having to start over again. Don't be in denial - suck it up for now and accept that this is what you need for now. It will get better. In a year you will look back and see how far you have come But this is a tortoise journey - not a hare. And remember who won.

So do you think that even though I am fairly certain this is neurological pain, the fact that it hasn’t settled as I would expect it to since I reduced the pred from 10mg to 9mg means I should go back to 10mgs for a while? I have no stiffness in my hips or pain and stiffness in my shoulders.

I am in no hurry to reduce  but the rheumy nurse specialist told me to start reducing by 1mg on the first of every month from 1st August so I’m following instructions

I have read enough here, thanks to you and others, to know that it can be a slow process and that is fine with me, but will it be fine with my GP and rheumy.

My GP now has the job of prescribing my pred and I think he knows me well enough to trust me to reduce in my own good time.  The rheumy however does not know me at all and I don’t know how much my GP will be influenced by him. Or even what his reduction policy is once you get to the lower doses.

Thank you for your help.  I know I should try and talk this through with my GP but in all fairness he is not a Pain Specialist nor is he all that experience with PMR.  Whatever his reason he will not refer me back to a pain specialist saying there is no point. Maybe he means the waiting times are impossible long. Even if I were in a financial position to pay for a private appointment (which I am not) I would not be comfortable in doing so. I believe in the National Health Service.

Thanks again

Hi Kate, you may find that 1mg reduction per month is a bit much when under 10mg and half a mg is more achievable. I know people have been very successful at reducing that amount while 1mg was a bit too much. 1mg may work fine for you of course.

Hi silver, I wish I could say I enjoyed it. it was the ticket for free college education though. But for four years of tuition I've paid with three knee surgeries tkk shoulder surgeries two broken collarbones and fabric ankle braces. We encourage a gladiator mentality and I'm not convinced it's either good individually or nationally. But I should avoid politics because it's a Minefield here in the US. Suffice it to say I've been very unhappy for the last year-and-a-half.

Yes Kate rugby is very similar to in the injuries and the pain.

I wish you the very best and there are some very very smart and wise people on this site. The regular contributors are as compassionate and knowledgeable on this particular illness than any rheumatologist I've met.

He's probably got a good point - the only pain relief for PMR is pred, nothing else works enough to be worth it. If you have a diagnosis of PMR then the chances are it is PMR pain returning because you have tried to go too low at this point. The sensible action is to try a bit more, a dose that was enough to relieve the pain until now. If it works it isn't neurological pain - pred doesn't do anything for that at these doses. But if you leave it too long then the inflammation will have built up to a stage that just 1 or 2mg won't clear up and you may have to go higher.

Top experts say 1mg per month - PROVIDED THE SYMPTOMS ALLOW. If they don't allow - you adapt the reduction, staying at the dose that works until you can reduce without returning pain and in some cases cutting the reduction step to 0.5mg.

Recent work shows that PMR has a median duration of 5.9 years. Simple arithmetic shows that reducing at 1mg per month isn't going to take very long - and it obviously is unrealistic for the majority of people. You are unlikely to be an exception, however much you would like it.

https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

I am sorry to read that it has been such a painful sacrifice for tuition and to be suffering even more now does make one wonder if it was worth it. I guess only you know that but it doesn't sound like it. Mine was due to a gung-ho, I can do anything, attitude, in my younger days. Politics is a minefield here, too, though I'll not go down the route of where you are.

The 10 mg level is a sticking point for many.  I had been happily reducing by 1 mg per week to that point.  Going to 9 was a step too far.  Returning to 10 for about three weeks then using only the dead slow nearly stop taper plan thereafter works for me.  I've been at doses below 3 for the better part of two years now, achieving 3 at the end of the first year, and 1.5 by the end of the second.  Have been taking pred a little over 3 years altogether.  

Anhaga, when I reached 10 started reducing by 1/2 mg using full DSNS tapering. No problems with the tapering. I know it's slow. I problem I have had is hurting myself. Now back on my taper from 6.5 to 6 mg, nice and easy, staying a little less active, but positive with a smile. ??