PMR symptoms after 2 months of zero prednisone

[Pamk1949]

Hello. I’ve had GCA/PMR for 4 years exactly, with a few flares in that time. When those flare started I went up 5 mg from my dose for 3/4 days, then straight back down to just above the original dose.

I have been on 1mg or lower for the past year, tapering VERY slowly to zero. I’ve been at zero now for two months. But had some knee pain and hip and shoulder issues for the past week. My question is, because of the 2 months of zero pred, can I just go up to 5mg for a week then back down to maybe 2– which is exactly where I should probably be forever.

I called my rheumatologist, and without her speaking to me she called in a persciption for (30mg for 3 days each) then (20 mg for 3 days each) then (10 mg for 3 days each) then STOP. I have been trying to speak with her, but does this taper seem right in your experienced tapers? PS: the flare wasn’t even something I couldn’t live with, just making me question what to do. Never any visual symptoms Please advise your opinions thank you!

[PMRpro Ambassador]

I would think your idea of plus 5mg and settle at 1 or 2mg is far preferable to her option. If the underlying cause of the PMR is still active, while her way will clear things out like a springclean, once you stop the pred it will just build up again. This is a chronic problem - so just like a springclean will leave the house sparkling for a while, the dust will build up again without a weekly dust.

[Pamk1949 in reply to PMRpro]

Thanks PMRpro for you expert advice as usual! The rheumatologist office told me they were just too busy to speak with patients, so they just call in prescriptions basically -short staffed because of covid

[PMRpro Ambassador in reply to Pamk1949]

So are calling in prescriptions that may not be appropriate - which is potentially wasteful and risky.

[HeronNS in reply to PMRpro]

That kind of pred dosing is used in other conditions isn't it? I'm sure I've seen it mentioned, but it definitely isn't right for PMR!

[PMRpro Ambassador in reply to HeronNS]

The high starting dose short taper? Chest infections/asthma, gout, flares, a whole range of things causing inflammation WHERE ANOTHER DRUG IS BEING ALLOWED TO DO ITS JOB in the meantime. But they are all acute conditions - which they seem to fail to realise is NOT the case with PMR.

[HeronNS in reply to PMRpro]

I seem to remember that my daughter in law's father was in hospital for a chest problem and they did something similar, and tapered him off quickly. They had forgotten or somehow missed the information that he was on 8 mg pred for PMR and he was briefly deprived of that necessary dose!

[PMRpro Ambassador in reply to HeronNS]

Sometimes you just have to wonder ...

[HeronNS]

I don't know what they think they are treating, but it's definitely not PMR! I was at zero for a month last year, then had to start taking pred again. I did start at 5 mg and it worked so well I dropped very quickly down every few days by 1 mg until I was able to manage on 1 or 2 mg for the next few months. Life has become more complicated since then. Hopefully you will find a small dose will be enough indefinitely. Certainly PMRpro's suggestion is the best.

[SheffieldJane]

Seems a bit overkill to me. In the absence of bespoke advice I would be tempted to save the day with your plan.

[Pamk1949 in reply to SheffieldJane]

Thanks for responding. Yes, I didn’t take the prescription she ordered — I’m doing the plan I’ve learned on this website

[Betty_H]

That's the exact taper my rheumatologist gave me two weeks ago for a flair. It worked very well, and I didn't have any trouble coming back down. My prednisone dose is at 10 now, though, not 0. 10 is the lowest I've been able to get to since my diagnosis in December 2019. I don't know if it will work for you, but it did for me. Good luck.

[HeronNS in reply to Betty_H]

The main problem is if you're dealing with a flare you are probably taking far more pred than you need if you follow this kind of procedure. Even when my flare of 2021 was at its worst I never at any time needed to take more than 10 mg and even that not for more than a day before starting to taper. Perhaps I could have taken 10 for longer and dropped down faster after a week, but it came to the same thing in the end and was *much* less pred than the prescription described. In fact 30 mg is twice what I was prescribed in the very beginning!

[Pamk1949 in reply to HeronNS]

Exactly, way too much prednisone. She doesn’t treat PMR patients often I presumed. She told me it was a very standard flare fix. ???I’ve been going to her for 2 years, checking in and getting blood tests,etc. I’ll be looking around now for someone more knowledgeable—I have a great neuro-opthamologist for GCA though

[PMRpro Ambassador in reply to Pamk1949]

It is a standard flare fix for other rheumatological disorders. But the problem is they don't "get" the difference so think PMR should be handled like RA

[Hildalew]

The rebel in me observes that if you collect the prescription you will have a goodly supply of doses at the level at which you wish to take them.

[Pamk1949 in reply to Hildalew]

Exactly, my “stash” was starting to expire —😉

[Charlie1boy]

Hi,Interestingly, that’s very similar to me. I had about four months at zero after six years plus of pmr, and was less than five mg for the last three years.

When the first signs of pred pain emerged earlier this month I started at three mg for a week, and am now on two mg. it has worked fine for me. If I’d had more pred left over, I might have tried five mg, but I didn’t particularly want to bother my excellent GP to ask for more, and I wanted to see whether the three mg worked.

As I expect to remain at two mg for a few months now, I will get myself some more pred in due course.

Good luck whatever you decide to do.

Paddy

[Pamk1949 in reply to Charlie1boy]

Thanks for responding. Glad it’s working for you, I plan on doing the same, and thinking about staying on a low dose (maybe 1)

[Charlie1boy in reply to Pamk1949]

I think that seems sensible. Just hope it works out for you.Best wishes

Paddy

[AyJayBass]

Makes me feel less guilty about my growing stash of Pred! Repeat prescription has not been changed for 6 months,

[PMRpro Ambassador in reply to AyJayBass]

Just keep an eye on the use by dates ...

[ipsidipsy]

I have has GCA for 6 years with a few flair ups and increasing my prednisolone accordingly which solved the problem and then reducing. I have on 5 occasions tried to reduce for my current 2mg down to l 1/2 and then 1 and have had such pain in my shoulders, legs, hips in fact everywhere even my wrists started to ache. When I returned to my 2mg a day the pains gradually went. My question is could it be prednisolone withdrawal symptoms, I'm sure my aches and pains were.

[PMRpro Ambassador in reply to ipsidipsy]

You are never heading relentlessly to zero - you are looking for the lowest effective dose for you that gives the same result as the starting dose did. When you repeatedly get stuck at the same place it is usually your body telling you have arrived. Prof Dasgupta told us last year that he often keeps patients at 2-3mg as it reduces the risk of relapses.