Any hints to make life a bit more manageable?

[Fergyfish]

I'm a relative newbie to PMR.

Yes, I'm reducing my pred dosage...yes I ache a bit when I go down, but I'm now hurting a lot in my neck and one shoulder two weeks after s reduction. Is it the cold?

Is it that Ive been busier? More driving than usual? Does it even matter why? How long do I take painkillers and keep my fingers crossed before seeing my GP...my next consultants appt has been postponed so is still months away.

It's really interesting to hear that others are also struggling with the fatigue and talk about muscle weakness and balance issues ( which I guess are related). I live alone and work just two days a week, but still sometimes feel I just can't keep on top of things.

And hints much appreciated!

[PMRpro Ambassador]

You aren't heading relentlessly to zero yet - you are looking for the lowest dose that gives the same relief as the starting dose did and it sounds as if your previous dose was "It". Withdrawal pain is immediate and improves over a week or so - pain that appears after a week or more is a sign that there is a bit of inflammation each day that isn't fully eradicated and has built up to a stage where it can hurt again. More activity may make it feel worse but the basic cause is slightly too low a dose - even 1/2mg can be the difference between being OK and not.

In this case the pred is the painkiller - go back to your last dose, get it all under control again and try again after xmas and New Year when all the excitement is past. On the other hand - if the pain is relieved by paracetamol (nothing else is really advised for various reasons, NSAIDs because of the pred) then it may be the overactivity and that means more pacing and rest and adjustment of the activities to ways that don't cause pain. But for now, I'd blame that last reduction! This isn't a race and going slow and being a tortoise is a lot less demanding. There are doctors who recommend not reducing the dose during the depths of winter - they have a point.

And here's a bit of reading about managing fatigue and living with a chronic illness:

healthunlocked.com/pmrgcauk......

[Fergyfish in reply to PMRpro]

Thank you. Good point about finding my lowest effective dose...but what next if I've arrived at it?

[PMRpro Ambassador in reply to Fergyfish]

You take a break for a couple of months then try a small reduction again - you have to keep trying or you will never find out if the underlying cause of the PMR has gone into remission.

It isn't clear how it all works, there is no way of measuring it, but the impression I have gained over years of hearing people's stories is that for most cases the disease activity is greatest at the start and then over time slowly falls off but not in a linear way. It seems to cycle, if you drew a graph of the activity you would see it falling and then rising again, falling and rising, but always the highest activity it gets back to is lower than the last time. If you are reducing you might get to a lower dose as it is falling but then find it isn't quite enough as it rises again and so flare. That's why we say it isn't a race - if you try to reduce faster you run the risk of ending up in yoyo situation, dropping the dose and having to raise it again. If you do that too much it becomes harder to get things under control again and often you end up having to go to higher doses to stop the pain.

You don't say what dose you are at or how long it has taken to get there so it is difficult to say more at present than the lower you get, the smaller those reductions should be for all sorts of reasons in order to find your right dose most accurately. By 10mg 1mg is more than enough - the reduction should not be more than 10% of the current dose.

[Fergyfish in reply to PMRpro]

Thank you....that's really helpful.

I'm lucky..only needed 7 mg initially and am now down to 5 and 6 mg on alternate days. Rheumatologist told me to drop by reducing 1 mg alternate days every month.... but not what to do if pain and stiffness returned!

My mum also had PMR...so I sort of expected to get 'stuck' at some point, but still hoped not to! Plus, it's different when it's you it's happening to.

[PMRpro Ambassador in reply to Fergyfish]

If you only started at 7mg - against all recommendations by the way! - then you are likely to be much closer to what you will need ongoing anyway. At this level, alternating doses like that is a big % change day to day, cutting tablets or asking the GP for 2.5mg tablets (available in both enteric coated and plain versions) makes it possible and much easier to deal with.

It's great when you can manage on such a low dose at the start but you are likely to run into problems sooner. Good luck!

[Fergyfish in reply to PMRpro]

Yes, I did wonder about the alternating doses. My son ( who's worked in pharma) advised against cutting tablets as he thinks the active ingredient may not be evenly spread throughout a tablet. What do you think?

So nice to be able to talk to someone about this! Especially today when fatigue has hit me big time too.

Thank you!

[PMRpro Ambassador in reply to Fergyfish]

Here where I live we are expected to cut tablets, some come with scores to allow it. Lots of people have pill cutters and cut whichever larger dose tablet will work best - 5mg are easier to cut to get 2.5 and add 1mg whole tablets than trying to split a 1mg tablet. Best is to ask for 2.5mg plain tabs which are available. Then you are fine down to 2mg. Then the fun starts

All tablets are made the same way and manufacturers say the dose should be distributed pretty evenly. However - in this case it isn't so important as over the 2 days you will have taken a full tablet dose and what you are aiming for is to take less than the last dose. It doesn't matter if one day you take 0.45 and the next day 0.55, still far far less difference than the alternating doses.

[Fergyfish in reply to PMRpro]

Ok..pill cutting coming up!! And asking the GP for different tablets.

Thanks!!

[PMRpro Ambassador in reply to Fergyfish]

They'll try to tell you they don't exist - so take the details

medicines.org.uk/emc/produc...

[readingbooks in reply to Fergyfish]

I find a good pill cutter cuts 1 mg tabs very well and .45 or .55 equals 1 over 2 days and is fine.

[Hidden]

"Rest, rest , rest," it's good advice that I wish I had taken onboard in the early days; but I've finally learned! Also, have ZERO expectations and you will never be disappointed. Best of luck!

[Fergyfish in reply to Hidden]

It's such a balancing act...life must go on, and be worth living.

Last week I had my son staying. He now lives in the US and I don't get to see him terribly much. But this week I'm good for nothing ..... I'll have all 3 sons here for as for the first time in 5 years. I want them to have a good time and to be part of that.....but am wondering how I'll cope.

Anyway...I'll have a nap now ...

Thanks for responding. Living alone isn't great when I need to talk things through, even if it does make napping easier!