Is this a life sentence/

Oh Steve, what a disappointment.  I think a lot of people get down to that level but have to stay there for a long time before they can reduce again in tiny, tiny steps.  At what rate had you been reducing?  There will be others along with a lot more experience than me, but I'd bet that it isn't a "life' sentence just a longer period in pred prison than is really fair.

Steve 1

I was diagnosed in 2013. I started at 15 mg of Prednizone, at the end of the first year I had it down to 1 mg. when I hit 0mg I was fine for a week then it hit again. Back to 15mg and the gradual decline again. Because I still occasionally felt hip pain I knew it was still there. When I hit 5 mg I stayed there for 6 mos. I was doing well. In Oct I had a few weeks of stress that I knew would tip me over the edge. My Rhumy put me on a week steroid pack with a daily decease. I'm now at 7.5mg and staying there for a while since I have 2 surgeries coming up. I will decrease to 5mg in a couple weeks and stay there.

I'm told the PMR can last 2-6 years or a lifetime. I pray it goes away, but time will tell.

This site is a collection of great advice. Much more than I get from my Rhumy here in the states.

My advice is to reduce stress, exercise and find a mg that works for you until this PMR passes. .

Hi steve, we all feel for you getting so close but do not feel that PMR is for life. We often get someone come on who has been there and got thru it and has been clear of preds for a year or two. As other sufferers will tell you when you get to a low level of 5 then reducing very very slowly at 0.5mg may allow you to get lower still. Personally if I can manage to get down to 3 or 4 mg a day I will willing live on that sort of dose for life if it gives me a pain free existance. Stick with it and good luck.

So this leads me to wonder if you are 4 or even 3 mg or 2 mg of pred isn't that a pretty low dose?  So that makes me wonder if the side effects of the pred with such low doses are really much at all and what is the harm then?  Or are they still pretty bad effects even at these levels.  If say 3 mg is what you have to stay on long term, for example, I'm wondering how bad that is.  I'm not even at the level of any tapering (just a newbee still at 10mg) so I guess I'll face this soon.  I don't want to sidetrack the discussion but it does lead me to wonder. Thank you and good luck Steve.

You are so right, when this kind of thing happens it is so discouraging, disappointing and frustrating.  But no, it isn't a life sentence as many on here will agree.  I'm sure some of them will be coming in to say so.

I had to go from 2.5mg to 40mg due to a GCA flare and I think I cried for a week -  but in the end I knuckled down and got on with it and I survived fine.  I'm now on a 5mg maintenance dose for life but it bothers me not.  It is less than you would make naturally and there are no side effects at this low dose - I haven't found any at all in 3 years.

I have limited mobility due to other problems which have nothing to do with either Pred or steroids, but when I count it all up, I'm on the winning side.  Don't be downhearted, I got there and so will you.

the short answer is maybe, maybe not. And there's no way of knowing how long it will last.

Which leaves one with a choice. To think of it as a life sentence or something that will go away in its own time.

I prefer the latter. It will go away.

Even if it never does I'll feel better about it. And I won't let it grind me down.

I think Jullian has said it - you can look at it as a life sentence - or you can look at it as a part of life that is there and won't actually make that much difference in the long run.

I've had PMR for well over 10 years, I have finally got to below 5mg by using the "Dead slow and nearly stop" approach. At 4mg I'm pretty good, I'm better at 5mg, 3,5mg is too low and, after discussion with my rheumatology trained GP,  I will probably go back to 5mg for the next 6 - 12 months at least. I feel good, I have no identifiable side-effects and while I'm sure it would be better if I wasn't taking any pred that isn't a comfortable option and would mean a poorer quality of life and risk factors for all sorts of things - actually the same things that pred is said to put you at risk of such as muscle problems and weakness leading to immobility, weight gain and from both hence raised BP, risk of diabetes and high cholesterol, osteoporosis.

There is evidence that even 5mg pred still can be associated with loss of bone density - but that is NOT in everyone, if you are going to lose bone density it will have happened, if it hasn't then low doses are not going to make much difference.

So you are popping a pill - there are lots of people our age who pop a lot more than 5mg of pred per day. I suppose I am one of them - I have atrial fibrillation. On the other hand, I have no side effects I can identify (except maybe too low BP now and again) but they prevent a lot of nasty things and give me a very god quality of life. What is there to complain about? When we were children people with the same problems were old and crippled - even at 60. 

I have no intention of letting this be a life sentence.  

Yes.  I have great confidence in my rhematologist.  He believes most practioners make two mistakes (1) starting on too high a dose (He regards 15 mg as the max); and (2) trying to get patients off the drug altogether, because the symptoms invariably return.  I am now taking 6 mg per diem, having tapered by 0.5 mg a month.  His goal is to get me to below 5 mg (4 ?) and stay there forever.  It could be worse!  I hope this helps.  - Tony