One more year on and no progress with tapering

[Laineydee]

I’m feeling utterly fed up as I seem to be making no progress with my tapering and I’m now just into my third year of PMR. Last year after a flare I settled at 7.5 mg. This seemed like my happy place and as I had my daughter’s wedding to cope with and a holiday, I stayed at this dose for about 5 months. I then started a slow taper using the DL 4/5 week plan. I got down to 5.5 but started to flare so upped by 5 mg for 10 days then dropped to 6. I’ve been on 6 for 8 weeks now but always with some niggles. These are getting worse especially in the morning, to the point where I’m struggling to get dressed again although it eases during the day and is ok by nighttime. My question is - what level of pain should I be prepared to tolerate and should I just ease back to 7.5 again or do the flare protocol. I’ve also noticed when I get up for a pee in the middle of the night, I can move more easily - this is before the 4 am inflammation rush so should I be taking my pred at night instead of at breakfast? Sorry for long post but feeling desperate as to what to do. Got a very busy weekend ahead and at the moment, don’t feel I can cope. As always, I’m so grateful for your advice and input.

[DorsetLady PMRGCAuk volunteer]

You need to get this latest blip back under control -so maybe try 7.5mg for a week. If you don’t feel any better at that dose -then repeat flare protocol.., and suggest back to 7.5mg (no lower).

Once you’ve done that, you could try taking your Pred either at bedtime or if you get up every night, take it then (with just a spoonful of yogurt or something light).

But whenever you take it or whatever method of tapering, if you go below the dose your PMR requires, you go below it.

Ideally you shouldn’t have any pain, but not everyone achieves that..but certainly you should feel as good as you did on initial dose and no worse at the end of a taper than you did at the beginning of it.

,,and don’t forget the pacing advice -that’s just as important 3 years in as it was at the beginning -sounds as if you might have😊

healthunlocked.com/pmrgcauk......

[PMRpro Ambassador]

How much pain? No increase on what you feel good at.

If you have niggles that then increase, that usually means you are now at slightly too low a dose to control all the inflammation and it is building up again. 7mg sounds as if it is probably right for you at present, maybe 6.5mg. But I wouldn't be stepping down more than 1/2mg at time now if I were you and not more often than every 4 to 6 weeks.

It was over 4 years before I got reliably below 10mg. I got to 4mg eventually and then had a massive flare that took me back to the beginning and it has been a rollercoaster ever since. Never try to force anything.