Expert supposrt for a slow taper of not more than 1mg per month

[PMRpro]

This paper is an approach to managing PMR that the then Bristol group under Prof Kirwan used which reduced the rate of flare from 3 in 5 to 1 in 5 and which I have quoted many many times. It is aimed at GPs but obviously a lot of rheumies could do with reading it too!

Our approach to the diagnosis and treatment of polymyalgia rheumatica and giant cell (temporal) arteritis (PDF Download Available). Available from: researchgate.net/publicatio...

There are things in it that on the basis of experience I disagree with - on his criteria I don't have PMR (never had a raised APR in my life (that's ESR and CRP) but maybe my response to 15mg pred would have convinced him had he tried it!

But on duration of PMR and slow tapering they say

"Evidence from published cohorts of patients suggests that the dose should then be slowly reduced and that stopping PMR treatment is feasible from two years onwards. Rate of steroid tapering at more than 1 mg/month is a clear predictor of relapse. "

So clearly refuting the concept PMR lasts months although no mention it can go on much longer - and supporting slow reductions.

[SheffieldJane]

Thank you for posting this. I will need to read it a few more times to completely absorb and retain the information. At least it is an attempt to coordinate the approach between GPs and Rheumatologists. It acknowledges the necessity for a slow taper after 10 mgs. Interestingly to me it repeats theadvice of 10 mgs for one year. As I have only struggled after 10 mgs, it makes me wonder whether to go back up. I am symptomatic at 7 mgs ( exhaustion and flu type aches) but not really flaring. My GP thinks 6-7 mgs is a really high dose. ☹️

2 years duration is still a worry, doctors will treat this a gospel.

Thanks again for being on top of the information.

[PMRpro Ambassador in reply to SheffieldJane]

This is the group I've quoted in the past that do the 10mg for a year.

I know - even though they say "it is FEASIBLE to taper FROM 2 years" - that is never what they see. Every taper has a similar codicil but no-one seems to take it in. I've always thought that where they run into trouble is below 10 and that was why I worked out the DSNS idea from what Ragnar the Swede had experienced.

I really do wish I knew where the concept of only 2 years comes from - can't be from patients!

[Gaijin]

I haven't been able to open the link to the article, PMRpro. Ill keep trying but Yours and Jane's synopsis of the article has made me realize that I should go up to 10 and stay there for a long while.

This is the third time I have reached 7.5 mgs. And have had to go back up. The last time, going back up to 10mgs didn't hack it.. think it was12.5 that did the trick.

This time around( 3rd), I increased from 7.5 to 10 about 48 hours ago and have felt an improvement in the typical PMR symptoms ..not being able to turn over in bed, pain in the shoulders and girdle area, but no improvement in the flu like symtoms, fatigue and nausea and loss of appetite, headaches, shooting abdominal pain...After I manage to get my act together in the mornings, I feel OK but have been spending the whole afternoon and evening on the couch or in bed.I feel exactly like I did before DX.

How long should I wait on 10 mgs to work and what increments of pred should I use?

After being on Prednisone for PMR for 14 months now, I should probably know the answers myself... I had planned on chasing the rheumi nurse down to tell her that I couldn't get an appointment with the rheumi ( who wanted to see me in November) till February.But then I thought if I see the rheumi too soon, I won't have achieved his tapering goal and he'll tell me it's because I stopped the mtx. So I'd rather be guided by this fabulous forum and not stir things up,wait for the appointment that the central office gave me as the first available slot.

If I manage to open your link, PMRPro, I'm going to print it out and take it to the rheumi in Feb.😇

[Gaijin]

Was able to read the article finally.I wonder what a corticosteroid sandwich is? Haven't tried one of those.😂

After two days on 10 mgs, it seems it has worked to improve all my symptoms , so for now , I guess it's my new lowest dose I'm comfortable with.

[PMRpro Ambassador in reply to Gaijin]

They give a week of vit C, a week of 15mg pred, a week of vit C. The vit C is a placebo tablet which shouldn't have any effect, the pred should relive the symptoms in a given period of time (varies per patient of course) and then the symptoms should return in the same sort of timescale when the pred is stopped. Frankly, it seems a waste of a week to me!

If you have flared at a similar dose twice that is your body saying to stop abusing it and give it the higher dose of pred! And of course you feel like you do at the start - your body is in the same situation as it was then. That is what happens when you allow a flare by using too low a dose: you end back at the beginning!

[Gaijin]

You are right , of course, as usual, but I remember being on 7.5 and feeling the best I've ever felt since starting on pred. I held steady on that dose for about 4 or 5 weeks... That's what threw me off. This time I'm going to stay on 10mgs for a few months.For now it's my new lowest dose. I wonder if people that needed 20 mgs inicially, also need a higher maintenance dose? Such a mysterious disease!

[PMRpro Ambassador in reply to Gaijin]

Which probably means you need between 7.5 and 8mg - it takes some time for the tiny amount of inflammation to build up to a flare. You felt well because of the lower pred dose combined with it being almost enough.

No, I don't think so necessarily. I had a miraculous response to 15mg but have always struggled to get to a lower dose. It was over 4 years until I got below 9mg.

Maybe you could do 7.5/7.5/10 or something????

[Gaijin in reply to PMRpro]

Thanks, PMRPro, I'm going try something like that...sounds like a good plan!

[HeronNS]

Thanks for posting this. It is interesting. It's claimed here that staying at 10 mg for a year and then reducing by 1 mg per month leads to fewer relapses. That means you really would be off pred in two years. Also that the treatment has actually "cured" the disease, by leading to true remission, which I thought could never happen. We have to wait for the disease to burn itself out in its own time. Actually feeling a bit confused as I truly believed I was doing the best thing by getting to the lowest effective dose much earlier on. Even a recent flare didn't require me to go anywhere near the 10 mg level to get under control and I've been taking less than 10 mg since about three months after commencing treatment. Doesn't that mean I've had a far lower total pred dose than if I'd taken 10 for a whole year, even if I am now two and a half years on? Was it staying at 10 which helped these patients, or was it the more reasonable expectations of the slower taper? I think an interesting comparison could be made with people who use the DSNS or similar plan to see if by the time they achieve zero pred they have a similar, lesser or greater total pred load than those on the Q&K regimen who were successfully off pred at the end of the prescribed taper.