How long the taper: Hello, A couple of things, for... - PMRGCAuk

PMRGCAuk

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How long the taper

Southmead profile image
8 Replies

Hello,

A couple of things, for some reason I stopped receiving the HU notifications?

Hopefully by posting this question it puts me back in the swing of things. 5 days ago I tapered down from 6mm Pred to 5mm Pred. The stiffness in hips and shoulders returned immediately. I'm persevering , but my question is how long should I continue with the 5mm, or how long do the increased symptoms last during the taper? I am always surprised at the difference 1mm makes.

Thank You

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Southmead profile image
Southmead
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8 Replies
piglette profile image
piglette

If pain appears immediately it could be steroid withdrawal. It normally lasts a couple of days or so. PMR reaction usually takes a little longer, if you still have pain it is possible you have reduced too low. A 1mg reduction is quite high. It is 20%. I normally reduce by 0.5mg at that level.

Southmead profile image
Southmead in reply topiglette

Thank you, I will try the 1/2 mm taper.

piglette profile image
piglette in reply toSouthmead

Good luck.

PMRpro profile image
PMRproAmbassador

Immediate pain suggests steroid withdrawal but it should then improve over the following couple of weeks as your body gets used to the new dose. Is it at least the same? Or worsening?

Did you just go from every day 6 to every day 5mg? Or did you use one of the slowed tapers? That is about a 17% dose change - 10% is the maximum recommended step down so 1.2mg at a time would be better too.

Look at your profile page and look at your setting and see what you have selected and saved. If that doesn't help - contact HU Support and ask for their help.

Southmead profile image
Southmead in reply toPMRpro

I went straight from 6mm to 5mm. I will try with the 1/2 mm see how that goes. It's pretty much the same, perhaps an increase in shoulder pain.

PMRpro profile image
PMRproAmbassador in reply toSouthmead

If it stays stable fair enough - but not if it increases.

cranberryt profile image
cranberryt in reply toSouthmead

Most of us find that under 10mg, we need 1/2mg drops and must follow a slower plan. Like the dead slow or every other day, etc. 1mg all at once is going to be hard.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Re notifications -

Quick check list - before you contact HU or post on forum

a. Check your email notifications by tapping avatar (top right of screen). There you have a choice of what email notifications you receive - you don’t have to agree to any or all - see picture below.

b. Check your spam/junk folder

c. Try logging out of HU and in again

d. Try logging out of your email and logging back in.

e. Has your devise IOS been recently updated? If so check all of above

f. HU may have updated something..which you/we may not be aware of, so check a,b,c. &d

g. Contact HU.. help centre - see banner at bottom of screen

h. Don’t panic! Shouting at device may relieve your tension, but it does little else.🤔

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