I was diagnosed with PMR in July 2023 after having all the symptoms since October 2022. Started on 20 mg prednisolone and had reduced to 9.5 by early December 2024 with a couple of flares around holidays. I’m wondering now if it was all a bit too quick as the stiffness in my legs is as bad as it was before my diagnosis. I had increased my prednisolone to14.5 before Christmas as I was getting muscle stiffness in my legs and shoulders and I felt good after 10 days so reduced back to 10mg but the stiffness has returned with a vengeance to the extent I could barely walk back to the car after taking my grandson to a football match last night. I don’t ache when I’m sitting it’s movement that’s the problem. Should I increase my dose to 15? If so for how long and should I then taper slowly or drop back down to 10.
stiffness in thighs making walking difficult - PMRGCAuk
stiffness in thighs making walking difficult
I think you are right, you reduced too quickly, it is very tempting but it always backfires. It is very early days for PMR. I needed at least 20 mgs before the pain and stiffness were under control. 15 mgs was just not enough. If you have a knowledgeable doctor it would be worth talking about dosage with them. I would certainly go back to 15 mgs and see if that does the trick. The reductions could be a slow taper of half a tablet. Have a browse of the information in FAQs about tapering. Sitting in the cold watching your beloved grandson play football is not really very sensible either, but entirely understandable. Maybe give the tapering a rest until Spring. Take care!
Thank you so much for your quick reply. I think your advice to give tapering a miss until Spring is a good idea and confirmed what I was thinking. I’ll increase my dose to 15mg and stay there for a month before starting a slow taper. I don’t have a supportive GP so this site is my only support and my fight to get my prescription renewed will continue but the reminder of just how debilitating PMR is without prednisolone will give me the confidence to continue the fight.
I don't think it is too quickly - quickly isn't the problem. It is that you have at some point overshot the dose you need and that has allowed inflammation to build up again. I don't think you really know where that happened though do you? To still be at 10mg after 18 months certainly isn't that quick, even with flares - which shows it has happened before?
How long are you staying at a new dose before continuing the taper? When did you last week really "right"?
You’re right when you say I don’t know when I overshot. Ageing brings with it pains and stiffness so when they occur I thought it was just down to that until I realised I was struggling in exactly the same way I was before I was diagnosed with PMR. It’s disabling. I added 5 mg to my dose making it 14.5 and stayed on it for 10 days, when I felt so much better. Back down to 10 mg and I was ok for a few days then the pain came back, I would say even stronger. I like to walk. I don’t overdo it, but the stiffness in my thighs makes it too painful even moving very slowly. So if I go back to 15mg and only taper once I can move freely again how should I taper and how quickly
You could TRY 12,5mg with a low threshold for going back and then trying 1mg at a time. You are really struggling to reduce after this time though that could well be down to going to low and effectively going back to the start.
When you are tapering you shouldn't feel worse after any taper step - if you do then go back to where you were OK. You need to be sure it isn't PMR flaring up - that will continually get worse, other aches and pain usually stay much the same and other than osteoarthritis, most things aren't masked by pred whatever some will try to tell you.
It might also be worth asking for some physio - it COULD be something else affecting your hips and they should be able to identify it,
Is the “ 1 mg at a time” over 4 weeks at .5 every two weeks or stay on the 1 mg reduction until there is no more pain/ stiffness. I feel such a failure as I seemed to be doing ok and now I feel like I’m almost back to square one after 18 months. It could be I’ve just overdone things up to and over Christmas as my previous flare was on a family holiday.
Each reduction only 1mg - how often depends on how you get on with each one.
But yes - that does sound as if you may have form for not pacing too well!! And that can be disastrous!
Think you need to stop tapering for a while…full stop. And not sure [like PMRpro] that you have the ‘not overdoing it’ scenario right in your mind as yet..
Holidays with family can be difficult -you feel should keep up with them -but sometimes you can’t, nor should you try..…I told my son early days that they would be days when I couldn’t do what they wanted to, so I’d sit and have a coffee /glass of wine and watch the world go by when they scampered around…it worked out fine. But it’s up to you to tell them the situation without making a drama of it.
Add in Christmas, and no wonder you’re in a pickle..
See this fairly recent post on tapering in general -
healthunlocked.com/pmrgcauk...
Thank you DL. I will be more sensible and learn to say NO. Enjoy the rest of your holiday. X
Brilliant post re tapering. Thank you.
I’m exactly the same . I’m trying to taper but I get so fatigued and tired. I’m ok if I do very little but if I do stretches or walks , I’m very stiff
Have addressed that in my reply to Chat message…
Why is the pain and stiffness much worse in the morning
PMR - vertigo and left shoulder/neck stiffness, slight jaw stiffness on waking
Painful feet, back, thighs
Morning (and all day) stiffness
What should I expect?
