Is there any point reducing my Prednisolone further?

[Siena62]

I am now down to 5mg, having tapered from a starting dose of 20mg last April. I feel ok but am probably not quite as well (rather stiff in the mornings and late evenings) as I was last summer when I was on 10mg. I wonder whether I could manage the active holidays that I had last summer now. I'm inclined to stick at 5mg for a while (as I did at 10mg). I know that the disease is still active, which means that I won't be able to come off the Pred in the foreseeable future, and I have come to terms with that. I really want to avoid a flare and and wonder whether I should not attempt to reduce further until I feel that my symptoms have noticeably reduced. I actually like being on the Pred as I feel that it's given me more energy than I've had in years. That's not a reason to stay on it unnecessarily of course, but I do wonder whether inching down another couple of mgs is worth it given the fact that I'm not going to be able to come off it entirely for many months if not longer.

[PMRpro Ambassador]

You are never tapering relentlessly to zero - you are looking for the lowest effective dose for YOU. The dose that gives as good as result as you can get but preferably also as low as you can get.

Where did the stiffness first appear? To get from 15 to 5 since April is fairly quick, the median time is 15 months. You are obviously absolutely on the borderline between enough and not enough. How were you at 6mg?

[Siena62 in reply to PMRpro]

I've never been entirely free of stiffness. I vary a bit from day to day and vary throughout the day. I don't think that I was much different at 6mgs, which I stayed on for a month. I've been on 5mgs for nearly three weeks.

[PMRpro Ambassador in reply to Siena62]

Give it a lot longer before deciding to go lower - even a tiny bit too low can result in a flare over time.

[Siena62 in reply to PMRpro]

That’s what I was thinking about doing.

[piglette]

You seem to have done really well. A lot of people are never without some discomfort, not everyone is lucky enough to be one hundred per cent pain free. I find if there are any niggles it is not worth trying to reduce as the PMR usually comes back and bites you!

[SheffieldJane]

I also think that the winter weather is a factor and a reason to halt tapers. I am aware that strange viruses are everywhere so sick day rules may well be needed. I am also at 5 mgs now and it feels like the absolute brink of toleration. So I will pause until the crocuses poke through the earth.

[Louisa1840]

I agree with all of the above Siena. I got down to 3 mgs recently (diagnosed in 2017 and started on 20 mgs). It was when I tried to drop to two and a half that I had a massive flare and I now can't get below 8mgs!

[Hirwaen]

Hi Siena62, firstly I think you have done extremely well to get to 5 mgs in less than a year, which is why I would advise you to slow down for a while. At 5mgs you Adrenal glands need to start working again,( they will have shut down whilst you were on the higher doses) I know how tempting it is to plough on regardless and tell yourself that all is well but the advice from those who have experience is to reduce at a rate of no more than 1/2mg (half) a month.

Also, if you know in advance that you are going to be particularly active during the coming weeks it is a good idea to delay reduction. I hope this helps, all the best,. Hirwaen aka Yvonne!

[JuneWalker]

My husband was diagnosed with PMR 21 years ago at age 60. He started at 20 mgs of prednisone and tapered very, very slowly. He was able to stop prednisone after 3 years. During those 3 years he had a flare at 5 mgs and increased to 10 mgs. and started decreasing very slowly. His PMR disappeared after 3 years and he has been fine since.

I on the other hand have had GCA since April 2022 and my symptoms were/are completely different then his PMR. Tapering is quite different.

[HeronNS]

I completely understand your wish not to take more pred. If you feel okayish at 5 and can do most things you would like to, and - this is important - you don't start to feel worse as time goes by, then stay at 5 until you start to feel better. I don't think you should taper any more until the stiffness you still have goes away. If you start to feel worse then yo must bite the bullet and increase pred - don't wait too long, you've been at 5 mg long enough to know that any increase in symptoms is disease activity, not withdrawal. Your taper has been quite fast. In my early days I tapered to 3 within the first year, think taking a bit longer than you to get to 5 though. But I did not have any return of symptoms, other than some longstanding osteoarthritis issues which had been hidden by higher dose pred. I was only tapering by half a mg every six weeks by the end of that first year, and in fact it took me another year to get to 1.5, and actually I've been mostly (not always) at 2 mg for most of the last few years. This adventure started in 2015 at 15 mg. Perhaps had I stayed at 5 for a few months I'd have ended up better off in the long run, because although I had good symptom control my inflammation markers never really got properly low until this past year.