To walk or not to walk?

[CupOfEarlGrey]

I've recently been diagnosed with PMR and started on 15mg of Prednisolone which has now been reduced to 12mg. The meds are defiitely working but the stiffness has come back over the last few days. Do people 'work through it' and move and exercise or rest? I've tried both, and the pain and stiffness seem to remain the same... And it's so exhausting! Is this common?

[DorsetLady PMRGCAuk volunteer]

If the stiffness has returned, then maybe you are a touch too low on your dose especially if you have reduced too quickly ….and how quick did it return after you dropped to 12mg? Or was it there before?

If only a couple of days it may be steroid withdrawal… if longer, say a couple of weeks -then could be a flare. Whatever it sounds as if you might need to go up a bit. This explains difference -

healthunlocked.com/pmrgcauk...

General exercise is good - have a look at this -

healthunlocked.com/pmrgcauk...

[CupOfEarlGrey in reply to DorsetLady]

Thank you - it's been about 10 days since reducing the dosage. And thanks for the links!

[DorsetLady PMRGCAuk volunteer in reply to CupOfEarlGrey]

Another one to have a look through as you are new - unfortunately a lot with PMR is trial and error….it very often doesn’t act as the doctors think -

healthunlocked.com/pmrgcauk...

[SnazzyD]

It’s a balance. Don’t take the absence of pain as job done as your immune system will still be attacking it’s own body’s tissues. The reason the pain goes is that the resulting inflammation is being dealt with by the Pred while your body is given time to sort itself out. What your body needs is rest but you need to keep moving to maintain range of movement and some strength. Exhaustion can be the Pred but also the effect of your autoimmune activity. Ideally, if something tires you out, rest; don’t try to ‘beat it’.

Pushing through it just makes it more difficult for your body to find the resources to heal and stress can fan the flames. Both Pred and PMR make the muscles and ligaments more prone to injury so start very low as in lower than you’d like and then reassess a couple of days later to see if there is any payback. If not, increase a bit. This varies between people so it is a case of finding your level, very carefully.

You also need to be careful not to mistake stiffness from over doing it with a flare up of symptoms and vice versa. People can feel off, tired and achey for a few days after dropping dose and this is the body adjusting. If it doesn’t go or the discomfort starts a week or two after dropping, it’s more likely to be a flare due to not enough Pred for your current state. Don’t reduce if you have pain.

[CupOfEarlGrey in reply to SnazzyD]

Thank you - yes, maybe this is a flare then. It feels a bit like the 'wild west' navigating all this !

[SnazzyD in reply to CupOfEarlGrey]

Yes it can do. You’re not told much if anything about the experiential part of it so people end up here, hopefully not having crashed and burned too much. Add to that individual variation and one’s own normally over optimistic expectations and it is a cocktail for confusion and angst. It does settle and you get to know the patterns of bodily signals as you make your way slowly becoming less pickled in Pred and inflammatory by-products. One often does have to advocate for oneself in the face of plans on paper and what one feels is best. Not reducing too fast is really important.

[CupOfEarlGrey in reply to SnazzyD]

Thank you

[PMRpro Ambassador]

How recently? How long had you been on 15mg before droping the dose? You do have to get all of the stored up inflammation in the tissues down before tapering and it is more critical of the 15mg was only just enough - how much of an improvement had you had?

The basic rule in tapering is to reduce not more than 10% of the current dose at any time - to reduce the reaction of a body complaining at the change in dose and also because you aren't heading relentlessly to zero, you are looking for the lowest effective dose at any given time, it can be easy to miss at any time, in the early days the disease activity will be greater and need more to deal with the inflammation it is making. 3mg from 15 to 12 is 20% - we'd say a bit optimistic.

The pred has CURED nothing - it is a management strategy to mop up the inflammation and relieve the symptoms, nothing else. And it is all to easy to overdo it when you feel so much better - it is all about pacing your activity and NOT causing muscle stiffness from that.

[CupOfEarlGrey in reply to PMRpro]

The dosage was reduced after 3 weeks but no bloods were taken before it was reduced, so it does feel a bit arbitrary! This is really helpful - thanks so much. I'll speak to GP.

[PMRpro Ambassador in reply to CupOfEarlGrey]

In our opinion that is too soon - they used to say the starting dose for 4-6 weeks and we think that was much better, You can get away with it if you don't have very active disease and you are going to settle at about 5mg - but it took me over 4 years to reliably get below 10mg despite a 70% improvement in 6 hours in response to 15mg. And if you aren't even going to check it has achieved something - no, 3 weeks is just asking for trouble.

[CupOfEarlGrey in reply to PMRpro]

That’s brilliant to know. Thanks so much.

[Lonsdalelass in reply to CupOfEarlGrey]

Yes, speak to your GP. I had to see mine after dropping in 3 weeks from 15mg to 12mg, as I felt awful. I agree with PMRPRO that it's too big a drop, but it seems to be 'what the text book says' that many GPS go by. I had put my dose up to 13.5mg after being on this great forum.....of course my gp wasn't happy and was giving me a list of all the potential side effects of taking steroids and how he wanted me off them......talk about scaremongering.

[PMRpro Ambassador in reply to Lonsdalelass]

Unfortunately - their beloved textbook doesn't appear to exist! We even get doctors claiming it is "NICE guidance" but I was assured last night by Prof Sarah Mackie that NICE doesn't issue "guidance" or recommendations for PMR. They have an info page - written by an outside company which is about equal to AI since they have no personal knowledge. The tapers suggested are the sort used to taper in other uses of pred - NOT in PMR which is rather different. They will give the same weight to "tapering steroids" in PMR as anywhere else.

[LemonZest11]

You’ve come to the right place … isn’t the advice wonderful? These people are life-savers, they’ll take care of you! Hang in there with the rest of us. 🤞

[CupOfEarlGrey]

It really is! Hugely grateful to everyone - not a club any of us wanted to be a member of (!) but delighted to be here.

[Missus835 in reply to CupOfEarlGrey]

I cannot add more to the comments given, which are spot on. Stick with this forum. A fount of knowledge and the wisdom of having firsthand experience. Our people are brilliant- and we all care so very much.🌹

[CupOfEarlGrey in reply to Missus835]

I sense that already! Thank you

[Raewynne]

I've just worked out it's nearly 4 years since I've been into this relapse of GCA and I realise Im feeling stronger. Still get tired etc but it took 4 years the first time to get stronger too.I had terrible steroid myalgia ...muscle weakness..one of the prednisolone side effects at the start of this relapse .I couldn't lift my feet off the ground.Plus I got steroid induced glaucoma so I bought myself a scooter to get around on.I am stuck on 5mg still.Tried to go down lower but my body wouldn't let me and I was having another operation so I went back to 5mg .Felt a lot better there.My Dr doesn't know much so I'm grateful for this group .it's good to know the sick day rules to take care of ourselves. 😀

[S4ndy]

I saw your initial question was regarding exercise and walking in particular. I am a qualified exercise teacher and I have had PMR for 7yrs and taking prednisolone from 30mg at the start to 5mg now which is my long term dose needed to avoid flares.

Throughout the years I have tried to maintain my posture and my mobility. At various times I have had to use walking poles, walking sticks, rollator walking frame or mobility scooter. My advice to you is to use whatever aids you need to keep you going. Little walks and often rather than big hikes are the key in my humble opinion. Keep your joints moving too by doing gentle movements. I find I use my ballet and yoga exercises a lot as it helps to mobilise and stretch my muscles. I do most of my exercise at the pool at the moment as I've recently had back surgery. I feel wonderful supported by the water and have made good progress. Dry land is not so good but I do my exercises on my bed as I wouldn't be able to get up off the floor.

I think if you search this forum for exercise you will find other useful info. Be gentle on yourself and remember that your muscles will take longer to recover and tire quicker.

So welcome to the group nobody really wants to join xxx

[CupOfEarlGrey in reply to S4ndy]

Thanks so much for this. I think my head knows that’s right but my heart wants to hike… and is quite impatient! Stretching feels like the right way forward.

[Pr0jection]

I feel some stiffness in my neck and shoulders when I get up in the morning. I have an early morning walk for about 40 mins which seem to work for me.

[CupOfEarlGrey in reply to Pr0jection]

Good to know - thank you. And yes, gentle walking seems to help…

[Gossiplady]

Hi CupOfEarlGrey! Yes, as you have gathered, this is the right place! Good days and bad, we are here for you. Questions answered very quickly and far more reliable than most docs and Rheumys. Rant when you want to, ask questions even if you think it is silly. No personal questions are silly, they are pack full of stress, which feeds PMR like a banquet. Keep strong!

[CupOfEarlGrey in reply to Gossiplady]

Thank you so much. So glad I’ve found this group.