Pred relief not lasting 24 hours: Hi, I am on my... - PMRGCAuk

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Pred relief not lasting 24 hours

Kritterkid profile image
10 Replies

Hi,

I am on my second trip with PMR. This time my Rheumy started me on 10 mgs on July 11, 2024. Ten mgs held the pain off well.

While his instructions were to reduce to 7.5 after two weeks, I reduced to 8.75. The first three days were fine. But for the last two weeks, the pain starts up in all my joints before my next dose.

I am careful to pace myself.

Thank you for any suggestions!

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Kritterkid profile image
Kritterkid
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10 Replies
piglette profile image
piglette

One really has to ask how much do some doctors know about managing PMR with corticosteroids.

PMRpro profile image
PMRproAmbassador in reply to piglette

Some of them appear to not know a lot ...

PMRpro profile image
PMRproAmbassador

In my opinion that starting dose is far too low - you start the patient on a dose that is too high and then taper down, but part of the purpose of the higher starting dose is to clear out any accumulated inflammation, especially bursitis around joints. This then allows a bit of a buffer once you start to taper the dose. And this is a TAPER, your rheumy is reducing in largish steps and there is a subtle difference. Whatever your starting dose, the recommendations are to taper in smaller steps from 10mg, and no taper step should really be more than 10% of the currrent dose. So now you should be on 1mg steps at the absolute most - 1/2mg at time is better. Sounds slow but it isn't slow when it works!!!

However, it sounds as if you are absolutely at your limit and as a result the antiinflammatory effect isn't holding the full 24 hours. One way of dealing with that is to split the dose, about 2/3 in the morning and the rest later enough to extend the effect until the next morning dose. Often lunchtime is late enough. That might work even at this dose - the only way to find out is try.

But what time are you taking your pred?

Kritterkid profile image
Kritterkid in reply to PMRpro

Thank you. I was a bit cavalier to agree to only 10mgs but just wanted to get started.

I awake at 2am to take my dose with unsweetened applesauce. The pains have already spun up and don't stop until about 8am and I have cleared the calendar of stressful activities. Not my usual results...

PMRpro profile image
PMRproAmbassador in reply to Kritterkid

Then I would say the dose you are on is simply not enough - as DL has explained. If it isn't enough - you are wasting your time trying to reduce the dose, you will just flare. The pred has cured nothing, it is a management strategy and has to be used correctly. I fear optimism has little role in PMR!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

I know you had a trial of Pred previously ….so I’m guessing that’s why you were started on 10mg this time around. Normal starting dose is quoted as ‘lowest dose between 12.5mg and 25mg which gives at least 70 % global relief’’… but most start at 15mg .. and for at least 3 weeks.

A reduction after 2 weeks to 7.5mg is extremely optimistic -being polite there!] on behalf of your Rheumy, who obviously should know better, but perhaps doesn’t fully understand how PMR works.

The previous bout of inflammation may have been cleared with the trial doses, so although 10mg may have been okay initially, it is obviously not enough on a daily basis and has allowed the inflammatory build up again.

Personal opinion - you probably need a reboot - you may find 10mg for at least a month is sufficient- but 15mg would be much better and not such big steps down.

And although pacing yourself is excellent- if the dose isn’t high enough, it isn’t high enough.. full stop.

Kritterkid profile image
Kritterkid in reply to DorsetLady

Thank you, I should have known better!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Kritterkid

But you don’t, that’s the point.. you are very often reliant on your doctor- and they may know the theory - but not how it may/will affect you. 😊

PMRpro profile image
PMRproAmbassador in reply to Kritterkid

So should the doctor!!!

Kritterkid profile image
Kritterkid

We have a drs portal so I just wrote to my Rheumy to advise that I am having issues and am increasing my dose.

Thank you all!

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