tapering with increased stiffness

[Albyn32]

GCA and PMR diagnosed Jan 2022. Started 40mg. At present Tapering from 8 to 7.5 for the last 6 weeks. I have found that I am feeling more stiffness between doses. I take dose in enteric capsules about 8am and the stiffness is with me until about 2pm. From 3-4 pm onwards no stiffness at all. Is this normal as the dose decreases? I am lucky enough to have blood tests before any taper. Assuming bloods are ok am I safe to taper down to 7 or do I wait until there is no stiffness at any time of the day?

[DorsetLady PMRGCAuk volunteer]

Would say you have got to the dose your body/illnesses require at the moment. You aren't reducing come what may to get to zero, you are reducing and trying to find the LOWEST dose that controls your symptoms. For you, that seems to be 8mg - won't always be, but is for now. Plus to have got that low in only just over a year is very good going.. but maybe time to slow down now.

Symptoms {or rather lack of them] should be taken into account before any reduction.. and as we know blood markers can often lag behind symptom, so they shouldn't be the only consideration - as many doctors seem to think.

Your adrenals should also be thinking about working again, so a slow taper - such as those linked below will help nudge those, as well as making your reductions at low doses easier. But if you need 8mg at the moment, you need 8mg, so no reducing for now- and when you do - only .5mg a time, not 1mg... as you are on enteric capsules you will need 2.5mgs to enable you to get half doses as they obviously shouldn't be cut.

Plans -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

Adrenal info -

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

If you are using enteric coated capsules, why don't to take them before bed? The enteric coating delays the absorption until the capsule has left the stomach which typically takes 4 or 5 hours rather than the 1 hour when pred is absorbed directly from the stomach. So any effect will be delayed. Taking them overnight means mornings are better and the pred is present when the daily batch of inflammatory substances is shed in the early morning and so they can cause less inflammation. At the higher doses this is less obvious but as you lower the dose there is less cushion and you notice it more.

[Bluey-1 in reply to PMRpro]

Daft question but how would you start this regime? Take an evening dose the same day you take the morning dose?

[DorsetLady PMRGCAuk volunteer in reply to Bluey-1]

Quite simple ...if you take the same dose in evening it might disrupt sleep a little [but it will only be one night]- and hopefully a much better following morning. ..and then off you go.

[Bluey-1 in reply to DorsetLady]

Mmm, might try that when I’m up for it. I guess if I wake up early hours in the morning and take it then followed by a before bed dose that same day it shouldn’t be too bad.

[Bluey-1 in reply to Bluey-1]

PMR Pro’s comment about there being less inflammation in the early morning hours by changing the routine is appealing.

[PMRpro Ambassador in reply to Bluey-1]

A study found the 2am is the ideal time for plain white pred to minimise morning symptoms. There is a version of pred with a coating that breaks down after 4 hours so you take it at 10pm and it releases at 2am. You can do something similar with the enteric coated pred available in the UK because the enteric coating delays the absorption.

[piglette]

I take my coated pred at 2am with a piece of hard cheese. It seems to work well. My advice is if you have any sort of pain niggles is STOP - DON’T REDUCE

[agingfeminist]

as always really good advice from those who know. I used to take my pred at midnight but quickly got into the 2 a.m. routine...taken with some spoonfuls of greek yoghurt. I really think it has helped me push through the adrenal wash out more quickly. Also now at lower doses went on the DL taper....the shared experience on this forum has really made life (almost) bearable or at least bearable most of the time.