How much pred to take?

[SQQQ]

Diagnosed with PMR in 2015. On pred since then, started at 15mg and the lowest I've ever manage to taper to is 3mg.2023 was a very stressful year and I needed extra pred for trochanteric bursitis & tendonitis.

In November, I was in hospital with sepsis 😳, lucky to have survived.

Wonderful NHS 🙏

My pred was raised to 15mg for a week and I've been slowly reducing since then. I'm now on 7.5 and 7mg on alternate days and am pain free.

What advice can this wonderful community for offer about further reductions?

And how can one ever know if PMR has burnt itself out? 8.5 years seems like a long, long time.....😔

[PMRpro Ambassador]

You know it has burnt out when you can reduce to zero without the symptoms returning - no other way really. 8.5 years IS a fairly long time but we have increasing numbers of longtimers on the forum with a few well into double figures - including me! It is almost 19 years since the first symptoms appeared but I wasn't diagnosed for 5 years. I was also stuck at above 15mg all through Covid to be able to cope with caring for my husband and I have only got down to 6mg by being put on Actemra (I don't live in the UK). I doubt my adrenal function will let me get off pred altogether!

[Viveka]

You are taking the reduction slow and it is working, so well done! Probably 0.25 reductions are a good way forward at this level of pred for people with long term PMR. Lots of slow tapering plans in the FAQs as I guess you know.

[HeronNS]

So glad to hear you are on the mend. What a no good terrible horrible time you had last year. On the plus side, 7mg is a pretty good low dose to be on, and provided your symptoms remain under control I'd be tempted to aim to get to 5 mg, and see how that goes, before even putting zero in your sights. The suggestion to take the tiniest steps possible is good. The lower the slower.... And never be in denial if you feel some niggling symptoms, just pause your taper. As PMRpro said long ago and I continually quote her: "It isn't slow if it works."

I've also been on pred since 2015, and although my "lowest best dose" was around 2 for a long time efforts to go lower invariably failed eventually. Until this time where I'm keeping fingers crossed. You're right, 8 or 9 years seems like a long time, but as the median time to be on pred is somewhat over 6 years, there have to be a few like us who take more than that time, as well as the lucky ones who take less. 🍀