What is a reasonable amount of time to determine ... - PMRGCAuk

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What is a reasonable amount of time to determine whether to taper down or go back up if needed?

Branches profile image
9 Replies

My biggest problem with PMR is usually the overnight. I wake up very stiff but am active during the day. Started last Feb at 15mg. Got as low as alternating 5 and 2.5 which clearly did not work and today just tapered to 5.5 from 6mg. Previously U had a long stretch at 7.5. I never forget what it was like for the 3 months before prednisone. Just trying to get this right.

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9 Replies
Coffeebeans profile image
Coffeebeans

My rule of thumb is any aches and pains in the 1st week after taper are generally withdrawal and anything that starts building 7 days onwards is probably because I've gone a touch too low.

We are all different but that works for me.

SheffieldJane profile image
SheffieldJane

Have you tried the 2am dosing? This can head off the release of cytokines ( inflammatory substance) and thereby give you a better morning. Possibly the Pred can run out of steam before the end of the day, so you may want to try some strategic dose splitting. You are at a tricky stage that needs a lot of thought.

Branches profile image
Branches in reply to SheffieldJane

I take 3.5 in the morn and another 2mg now with dinner. I used to take 2nd dose later. I think taking prednisone has had an effect on my stomach lining. Had it similar a few years back when using Advil frequently.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

As mentioned by Coffeebeans this post explains difference between steroid withdrawal and a flare - healthunlocked.com/pmrgcauk...

And this is an example of a slower tapering plan which may help on lower doses -

healthunlocked.com/pmrgcauk...

..and certainly don’t try reducing by taking 5mg/2.5mg alternate days - as you found the body doesn’t like it - too big a difference.

Mantra is - reduce no more than 10% of current dose.

Branches profile image
Branches in reply to DorsetLady

Thank you for sending me to revisit CoffeeBeans article. I feel a better frame of reference to deal with PMR. I have never really considered how activity affects me the next day. I am a part time tennis instructor and high school basketball coach. I will never forget the 3 months of torture before prednisone. I currently take 3.5 in the morning and as of today 2mg in the eve. I am a glaucoma patient and have to constantly monitor eye pressure. It has increased slightly since prednisone. Years ago I had a problem with gastritis from Advil . It’s similar on this medication. When you get to lower doses how do you reduce other than by 0.5?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Branches

It’s not Coffeebeans article it’s mine, but it re-iterates what CB was saying.

Have your eye pressure reduced as you have decreased the Pred doses, they do usually?

Not quite sure what you mean by - “When you get to lower doses how do you reduce other than by 0.5?”

If it’s because you can’t get 0,5mg tablets?…if you get 1mg (which presumably you have) so long as they are plain uncoated variety they can be cut relatively easily…sharp knife or pill-cutter.

PMRpro profile image
PMRproAmbassador in reply to Branches

Depends on the dose you have arrived at but there are slowed tapers on the forum in FAQs that spread the change in dose over more than one day which effectively slows the change in dose which is what matters.

pmr_nikola profile image
pmr_nikola

Are you trying to reduce by 2.5mg at the time? This would be too much of a reduction. Usually at the dose you are (5-7mg), it helps if you reduce only by 0.5mg steps.

herdysheep profile image
herdysheep

I had a long stretch at 7.5, and previously had a lot of trouble getting below 10mg. I learnt you can't always keep coming down according to a plan that the pmr has not signed up to. Too embarrassed to reveal how long it took me to learn that lesson! Have got to 5mg more or less successfully and will only try crawling down further when current stress reduced and feeling more stable pmr wise.

I have coated pred and always take with food/yoghurt and have avoided stomach issues (thus far)

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