PMR recently diagnosed

[Malaga47]

starters three weeks ago on 20mg Prednisolone. ESR now reduced considerably and GP said to reduce to 15mg which I did for three days but unfortunately pain and stiffness in thighs and shoulders has returned. Should I increase Prednisolone ti 17.50mg as this would not be such a sudden drop as reducing by 5mg has been. Help would be appreciated as I’m new to all this.

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

Oh dear another GP who’s overly ambitious with tapering plan….too big a reduction from 20mg to 15mg…and too reliant on blood readings.

Many find 20-17.5mg a bit much…so yes up to 17.5mg and hope it’s enough…. If not you may need to go back to 20mg.. fingers crossed that’s not the case.

And please tell your GP what has happened so he knows next time not to be so gung ho with reductions!!

Have a read through this link for your info and also the FAQs when you feel up to it -so at least you know what to expect -

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

i wish we could get through to them that reducing pred like that in other illnesses might work but it rarely works in PMR! They aren't reducing the dose to zero, they are supposed to be TITRATING the dose - tapering in small steps to identify the lowest effective dose, the lowest dose that works as well as the starting dose did. Before you can do that you must clear out any accumulated inflammation because the underlying autoimmune disorder isn't affected by the pred, it doesn't repair the dripping tap, it mops up the puddle it creates. Eventually the activity of the underlying disorder will calm down and you will manage with less pred - but it takes months, not days or even weeks to do that. In the meantime you need enough pred to relieve the symptoms. It can't be rushed, it all happens in PMR's own time.

The basic rule is not more than 10% of the current dose. 2.5mg at a time might work for some down to 10mg - but by no means all can get away with it. And you have to wait and see if it worked before carrying on down the slope.

[SnazzyD]

Also beware of withdrawal symptoms which can make one feel achey and rough. It tends to kick in about 1-4 after dropping the dose but should last a week or less. It can add to the confusion sometimes. Have a read of this from the FAQ’s about is it a flare or withdrawal. Personally in the early months, withdrawal made me have to spend more time in bed.

healthunlocked.com/pmrgcauk...

[Malaga47 in reply to SnazzyD]

Thank you for this information. It’s much appreciated.

[HeronNS]

You are right, the 5 mg drop was 25% of your dose, more than twice as much as recommended and almost certain to cause a problem. Really there is no rush. You'll actually get to a lower dose more quickly if you go down in 1 mg steps until about 10 mg. After five weeks on my starting dose of 15 mg (which was enough for me, many do need more, like your 20 mg) my doctor suggested 1 mg a week, which is pretty fast, but in my case it worked until I got to 9 when I needed to backpedal to 10 for about three weeks, then I started a slow taper. I cannot imagine tapering by as much as 5 mg or even 2.5. However I was down to my "lowest best dose" (apparently 2 mg) in just under two years, and I think the success was due in large part to a slow taper. "It isn't slow if it works".

Clear out the new lot of pain before starting a slower, smaller taper. Perhaps your doctor will supply you with some 1 mg tablets so you can reduce by 2 mg, which might be doable if you are truly back on track, at least for a couple of tapers, then 1 would be better. Good luck!🍀

[Malaga47 in reply to HeronNS]

Thank you so much. That is all very informative.

[MiloCollie]

I’d go back to 20mg but that’s me knowing what I know now. I value feeling well over a speedy pred reduction.

[Missus835]

Reduction to fast. I've been on Pred since Jan. 2022 (started at 20mg) and down to 13.5 mg. at this point 11 months later (my tapering did not start for a few months); and not sure if that's even enough. I'm not sure why these rheumies and gp's don't get that a slower reduction (like .5 mg at a time) is more beneficial in the long run. In my humble opinion, it's probably too soon for you to consider tapering and if so, only down to 19.5. It's not a race to see who can get to 1.0 mg the fastest, it's about what your body is telling you. PMR is a very individual disease/disorder or whatever label we put on it and unique to each of us. Listen to your body. I know it's so hard, but you're on a great website with really good mentors. You've come to the right place.

[Groovykindoflove1992]

I would go straight back to 20, as this is exactly what happened to me. 20mg down to 15mg after only 2 weeks. Wish I'd stayed at 20mg for 4 - 6 weeks and then dropped down to 17.5mg. Looking back now, I wish I could punch my original doctor on the nose 👿🤭

[Hopingsail]

Sorry to hear you are feeling rough - but do have confidence in the advice you will find on this Forum!

Accepting that I was not Superman (which was a challenge given the amount of competitive sport I was playing!) and was in for a long haul rather than a quick fix, was an important first step.

I have used Dorset Lady’s Slow Taper scheme at the rate of 1mg per 5 weeks BUT not hesitating to repeat a week or more if I start aching. Once down to 7mg dose I have gone at .5mg - still pausing/repeating as necessary. I’m now on 5.5>5. I’ve found it important also to be aware of moments of extra stress and strain in my life, when I have had to take a step back in the reduction programme to fend off the PMR.

My old Dad used to quote:”softly, softly… catchee monkey”. Seems quite appropriate for the necessary’approach to this “monkey” of a condition!

[ab58sf]

Reducing in 1mg amounts has been helpful for me. I got 1mg pills and went from 5mgs to 4, then 3, then 2. Some pain, but I am tolerating it in lieu of having some side pain. I am concerned about my pancreas on a higher dose. I see my rheumatologist in late December.

[larkthebark]

My biggest mistake before discovering this valuable site was to try to taper too quickly.

I had to go up to 22mgs to control my inflammation build up and took nearly a year to get down to 15mgs.

Fortunately I had a GP who listened and let me go at my own pace but only because I held my ground and told him of the valuable information and help I had discovered.

listen to your body and follow the advice given already by the pros.

I wish you well,

[Malaga47 in reply to larkthebark]

Thank you so much.