Muscle strength PMR

You need to be below 7.5mg before they start to kick in - then when you have been on that and below and roundabout five, ask for a Synathecen Test and take a book along.

Mine were fully functional because I had been on 2mg for at least six months.

Thanks Lodger, I was thinking I might get a base line at 7.5 or 8 and again when I get down to 4 where I had trouble last time.  I was hoping it would help me make decisions on reducing further😕.  Should I just wait till I'm at the lower dose do you think?

There is no hurry, just take it one day at a time.  The slower the better, you must let your body have time to adjust and find its own way.  Your mind has a mind of its own, you body has to be listended to and yes I know that is hard.  Try and go with the flow and remember the Tortoise won the Race, and Sailors always say 'Steady as she goes'. Wait till 5mg and then you will be in a better position to ask to see and Endochronoligist.  

Thanks Mrs Mac I think I'm ready to go to 3.5, but maybe I should get the adrenal test done first ( if I can get Dr to agree)

If you think you are ready - that suggests that you feel well. If your adrenal set-up is not up to speed you will feel very tired and have other general sorts of complaints.

If you are reducing REALLY slowly and in small steps and you feel well the chances are you aren't going to need to worry about a synacthen test. Certainly not until you are at 5 or below - in a lot of ways the later the better. Things can change.

Thanks Lodger and Eileen,  I'm afraid I'm a bit paranoid or ??? about decreasing pred because I do use the DSNS method or slower and did feel good when I decreased from 4mg to 3 1/2mg but still had my worst flare.  As it has been said so many times, our bodies all respond differently.

Your advice is always so appreciated and  I will wait and have my synacthen test done when I get to 4mg this time just for my own peace of mind.

hugs, Diana🌸

This isn't specifically for Diana, it just needs to be here in this conversation: 

A flare at this stage is telling you that the underlying cause of the PMR is still active and causing inflammation so you still need pred - at a slightly higher level! 

Remember - you are not heading for zero come what may. Youare looking for the lowest dose that gives you near enough the same result as the starting dose. That may be 9mg for now, or it might 3mg. It doesn't mean you won't get lower - it just means not yet.

And the underlying autoimmune problem isn't always at the same level - at times it may become more active for all sorts of reasons. You may have a slight infection, you may have physically overdone things, you may be under some stress - and the PMR symptoms get worse. It may mean a higher dose for a week or two - or maybe even longer, 

I know you all find it difficult - but pred is your friend! It is allowing you to have a fairly normal life now. There may be downsides - but without pred your face might be slimmer but you might be stuck inside all day unable to do anything, even forced to use a wheelchair. MrsO spent some time in that sort of state. That helps you put on weight, is a major risk factor for osteoporosis, being in constant  pain is depressing - and, in the final analysis, GCA can make you lose your sight.

How does that compare with a fat face? Or being a bit sweaty? Perhaps I sound a bit harsh - but it is the bottom line and we have always to bear that in mind. It is also unlikely to be forever - the vast majority of people are able to stop taking pred at some point or manage to get to a very low dose. There are quite a few people who have achieved that Holy Grail of zero pred - only to find other things raise their heads. Like OA pain! You can't have it all ways unfortunately!

Now everyone has got me thinking that I may be moving too fast.  I still get a  stiff neck & shoulders and sore knees in the morning.  Not like I was having a few months ago but enough to annoy me and hold me back from doing some things.  I'm about 1/3 the way through my reduction from 4 - 3.5 and 13 months into the PMR.  Should I be sticking with 4mg until I have no pain?

I should have added I'm still a bit tired by afternoon

The tiredness is not much to do with the pred - it is the autoimmune problem that causes that, it is another symptoms but the pred doesn't really help. 

Yes - to be at 4mg after 13 months is pretty speedy! If you have symptoms then it is suggesting your dose is on the low side. Just taking my current progress since the last major flare, it has taken me about 2 years to get to 4mg, I feel better at 5mg. The reduction approach recommended by the "Bristol paper" takes 15 months to get to the end of the 10mg stage - 6 weeks each of 15 and 12.5mg, a year at 10mg. It sounds very slow but they find it reduces the rate of flares to 1 in 5 rather than 3 in 5 which is more usual. Thei flares probably then come at below 10mg - their reduction there is 1mg per month - which is why we emphasis smoothing the reduction at that stage too. When you were at 5mg did you have the aches? 5mg is a very low dose anyway and causing little trouble in the way of side effects. Most doctors who know what they are doing stop worrying once you are below 7mg.

And forgot to say - yet again - you are NOT aiming relentlessly for zero. You are looking for the lowest dose that gives the same sort of result as the original starting dose of 15mg.

At 5mg I did still have the stiffness in the am.  the same as now at 4mg.  Although maybe I have less now.  As the tiredness is not to do with pred but the PMR then with your helpful info I will stay at 4mg for a while longer without trying for 3.5.  Heated pool here I come!