I guess this depends somewhat on how long you’ve been on steroids and how they are affecting your overall health.
Is it better to allow some mild symptoms to return in order to lower steroid dose (and come off it sooner) or will that just prolong PMR ?
Just started treatment and not sure what to expect. Should I try to get back to feeling my last ‘best’ self and how much time should you give a lower dose before deciding to go back up again ?
From my experience if you start having any aches DON’T carry on reducing. PMR will get the upper hand. You may have a few aches and pains when you start reducing caused by the steroid reduction, this should only last a couple of days or so and a mild painkiller should help.
thank you piglette
PMR lasts as long as it lasts - so you might just as well take the correct dose of Pred you need to make life comfortable - as piglette says take too little and you are likely to to have to raise your dose to get things back under control. and to be honest too low a dose is a waste of time.
As you are new to forum. Maybe have a look at this -healthunlocked.com/pmrgcauk...
.. and this to gauge the difference between steroid withdrawal and a flare [too low a dose ]-
healthunlocked.com/pmrgcauk...
This isvery helpful. Thanks for sharing.
So glad I asked that question - those posts are brilliant DorsetLady - thank you so much. Suspected my GP reduced too quickly (she admitted it) but is about to make the same mistake again
I remember asking a very similar question when I began taking pred for PMR in autumn 2021. Having never taken regular 'medication', I turned 70 and found myself needing pred to function (almost) normally. What with the Alendronic Acid, vitD3&Calcium supplements and Omeprazole on top, while relieving my PMR aches, I had to turn to this forum to understand why I felt weird, was having trouble sleeping, sweating abnormally etc., but coping OK. Almost inevitably, I reduced the dose too quickly, didn't pace myself, did too much physically and suffered the consequences with a flare - back to square one; snakes and ladders.
Now wiser, and 18 months in with PMR still lurking, I've managed to slowly taper to 6mg pred, no Omeprazole and have a sense of optimism that this summer will allow me to reduce even further while still feeling well.......🤞
Keep reading the splendid advice on this forum (mainly from our learned ladies) and hopefully you will feel well - you might be on prednisolone, but may it be your friend. OP
Thank you OldPenny. Good advice - not feeling better on return to higher dose so probably need to go back to first dose and start again. Snakes and ladders it is !
Hi - I've had PMR for about 5 years now and slowly reduced pred from starting 30mgs to current 2mgs. Also been on this forum over that period and it seems to me that people with best experience are those who follow their bodies advice. Those with more controlling medics seem to have more problems with flares etc.
As Dorsetlady points out - pred doesn't cure PMR - just makes some of the symptons bearable.
Thanks paulus65 - looks like I’m going to have to take control of this rather than follow medical advice. Been guilty of not listening to my body in the past but getting better with practice !
I think that it is crucial to use a slow tapering plan (DSNS or similar) rather than a 'cliff edge' reduction of your dose. When I was tapering, I expected (and accepted) that some 'mild symptoms' would return for a few days while my body adjusted to the lower dose, especially when I had finished the taper schedule and was permanently on the lower dose.
But my 'rule' was to wait for 4 weeks before starting to taper again and I would not start another taper until any returning mild symptoms had gone or had reduced sufficiently for me to know that the PMR activity was slowly subsiding and that the level of Pred that I was taking was sufficient to 'mop up' the amount of inflammation in my muscles that the PMR was producing.
If the PMR produced inflammation begins to build up, it is unlikely to go away without an increase in Pred dose and then you start the 'yo-yo' effect of raising and lowering the dose which (I believe) makes your route to zero pred a much longer process.
Thanks alangg - this is exactly what has happened. Wish I had challenged GP now as reduced me fortnightly. Going to have to start again
Fortnightly is much too quick - it can take that long to know if current dose is adequate.. and if it’s not you’ve reduced and added to the problem.
I also expected to be on first dose a month given how bad I had felt
Yes -trouble is guidelines say 3 weeks —both both PMRpro and I think 4-6 weeks is better -but hey we’re only patients…
A resounding no from me!
You have to remember that pred has CURED nothing. PMR is a chronic condition that can last up to several years. The starting dose is to clear out the accumulated inflammation and then you taper from that dose to find the lowest effective dose that is just enough to manage the daily new batch of inflammation created by the release of a batch of inflammatory substances in the early morning about 4-4.30am. If the dose is not quite enough, there will be a bit that isn't mopped up - and if that goes on, it will build up slowly until there is enough to cause symptoms again. If you can achieve a level that is just balancing the inflammation that won't happen and the pred effects are minimised.
Thanks PMRpro. Had not fully appreciated steroids give symptom relief only and PMR has to run it’s course (or come back in the future). Acceptance may take a while
Do read DorsetLady's introductory posts and plug through the FAQs - I'm sure they include snippets like that!
My intro post - linked yesterday!
Well as you all predicted I’m having to go back up two doses now to starting 40mg so not a good start. Incompetent GP dropped me 12.5% after just one week, 14.3% after week two and 16.7% after week three 😡
I can understand why GP made those drops if your starting doses was 40mg - you do only have PMR don't you? 40mg is usually GCA start dose...
It's maybe not so much the largish drops, but done too quickly....
Only PMR although I do have jaw pain. GP admitted the dose had been dropped too soon but wish I had queried the initial dose now as saw different GP yesterday who said it was high - her mother has PMR too
Yes-it is high for PMR -but maybe they were/are concerned about the jaw pain.
Is anything being done about that ?
Is there there all the time -if so could TMD/TMJ -but if it comes on when chewing and then goes when you stop (claudication) then MAY indicate GCA.
Nope - not a single docter warned me or has asked questions about the jaw pain. The only reason I became aware of GCA was thanks to a registrar who finally referred me to rheumatology and printed information on PMR. As a migraine sufferer it would not have occurred to me to go to A&E with head pain either so been worrying few months. I could not open my mouth and was on soft food a while, sensitivity in teeth on right side when chewing and unable to sleep on that side due to face tenderness. Thank you so much for that information - it could still be GCA so will bring forward dental appointment to see if they can help. Almost all jaw symptoms went on initial dose but came back slightly on lower dose. I clearly need to raise this with GP. If I’m just grinding my teeth it’s no wonder !
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