Has anyone heard of alternative tapering for Pred? - PMRGCAuk

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Has anyone heard of alternative tapering for Pred?

worrier62 profile image
27 Replies

Hi

Ive been looking at different tapering for Pred for PMR. There is one study that has been done where you take:

15mg for 3 days

10mg for 7 days

5mg for 12 months

Apparently this makes the side effects better and still works.

Has anyone heard of this?

Thanks for any advice

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worrier62 profile image
worrier62
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27 Replies
Koalajane profile image
Koalajane

I haven’t heard of it but I do know I wouldn’t want to do it. It doesn’t seem at all suitable for PMR

PMRpro profile image
PMRproAmbassador

Never heard of it - and believe me, I have seen a lot. And from our experiences, it could never work. Many don't respond to 15mg in 3 days - you have to clear out ALL of the accumulated inflammation before you can taper the dose and I know no-one who could manage on 5mg after 10 days.

Have you got a reference for it?

worrier62 profile image
worrier62 in reply toPMRpro

pubmed.ncbi.nlm.nih.gov/190...

PMRpro profile image
PMRproAmbassador in reply toworrier62

Thank you . I can't say I find the Abstract particularly convincing! It is also only a small anecdotal piece with 22 starting and 14 finishing the course with no controls. I know what my rheumatologist would say: probably wasn't PMR in the first place!

Bit as DL says - if there were any merit in it, I'm sure someone else would have picked up on it in the last 24 years.

You are welcome to try it - but I suspect we know what the outcome is likely to be.

SnazzyD profile image
SnazzyD

Sadly, it’s the PMR that decides how quickly you can go down the ladder rather than the plan. The plan is only good if it works for you and generally coming off the 15mg so rapidly would cause the rapid comeback of symptoms for most people. The Pred is there to prevent the inflammation from the autoimmune activity which is likely to be still high after only 3 days, even 10 days, even a month. If you need more at the start you need it. It starts to become less effective if you drop too fast too quickly and have to keep popping back up.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

New one on me… and most on here I suspect…. And where did you find it?

worrier62 profile image
worrier62 in reply toDorsetLady

pubmed.ncbi.nlm.nih.gov/190...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toworrier62

Will leave PMRpro who has medical training and has PMR herself to comment more fully…but would say if study was carried out almost 24 years, had it been considered a success then it would be more widely known about.

With only 22 patients starting and 14 actually completing the taper it’s a very limited study … plus it seems that some 6 patients were not followed up, so it’s not known if they suffered a subsequent relapse.

piglette profile image
piglette

Where on earth did you hear about that? Are you saying you have heard you can take steroids for three weeks and then you should be OK? You are normally talking about two or more years.

worrier62 profile image
worrier62 in reply topiglette

No you have to keep taking the 5mg for 12 months

piglette profile image
piglette in reply toworrier62

But you get down to 5mg in 10 days? Sounds wrong somewhere.

Koalajane profile image
Koalajane in reply topiglette

Yes, it doesn’t make sense, and then just stop! I wonder how the dear old adrenals would like that!

PMRpro profile image
PMRproAmbassador in reply toKoalajane

I imagine the concept is that at 5mg it isn't high enough to suppress the adrenals - but I certainly wouldn't like to test it!

Koalajane profile image
Koalajane in reply toPMRpro

I wouldn’t like to do any of it! Start at 15mg for 3 days. No thank you!

PMRrunner profile image
PMRrunner

That's even quicker and larger drops in the pred dose than the schedule the second GP I saw said I should follow. He said I would be off pred in under 15 months. Here I am nearly 6 years later heading very slowly towards 2.5mg pred

HeronNS profile image
HeronNS

Does this mean you are still considering whether or not you have PMR? Your earlier post was interesting in that your inital pain had somewhat improved without treatment. How are you now?

I don't think the alternative taper being suggested meets the criteria used for diagnosing the condition. There was a pretty high failure rate, and this may be because those people had what we consider classic PMR and really did need a longer period of time to recover. There seem to be several types of PMR, and there are some people who do recover more quickly than others and the successful cases may well have been those who would have been off pred in a shorter period of time anyway, or didn't have PMR at all.

There is some evidence that staying on a stable low dose for months does help avoid flares later rather than continuing a relentless taper to zero. For some of us 5 mg might be more than is needed, for others perhaps not quite enough. No matter what, we all want to take as little pred as we can so I appreciate your interest in this unconventional method. (I dont think I'd have done well and I was one who was able to taper rather quickly at the beginning!)

Bcol profile image
Bcol

I think the technical stuff has already been suggested, I can only add that I'm glad it wasn't a regime given to me. I did have 15mg for a few days but then went up to 30mg not down.

Daffodilia profile image
Daffodilia

Sounds like a load of rubbish

Mfaepink1973 profile image
Mfaepink1973

Never heard of it but was probably devised by someone who has never had PMR! I don’t think I’m alone in saying that the taper from 10mg to 5mg is when the flares are more likely and needs to be done very slowly. 10mg straight down to 5mg is a recipe for disaster!

PMRnewbie2017 profile image
PMRnewbie2017

Sounds ok for Chrohns or Ulcerative colitis but not PMR. If you consider the aetiology of PMR it is described as an auto immune inflammatory illness characterised by over production of Interleukin 6. The IL6 is produced daily in lessening amounts as the illness burns out, hence the dose of Pred necessary to mop up the inflammation can be reduced. PMR is chronic not acute so I can't accept that the protocol referred to would work, but would be keen to learn if it does.

Pr0jection profile image
Pr0jection

When I was first diagnosed I was put on 15mg for 3 weeks, then 10mg for 4 weeks, then 7.5mg where I've remained for the last 3 years. The 15mg stopped the pain within 48 hours although it took a further 4 weeks for me to feel I could achieve all I did before diagnosis, i.e. bend my knees so I could get in the bath! The 15mg for 3 days and the 10 mg for 7 days would be of concern to me. That's just my own thoughts though......

MiniSpec profile image
MiniSpec

When I started on Pred I was put on 15mg per day. I think it was a month later that I started to reduce the dosage. So for the next couple of months I was on 14mg, and following that dropped to 13mg, etc.

That more or less worked OK, till I got down to 10mg per day. As soon as I got to that level I started getting headaches. It turned out that they were GCA. This meant an immediate jump to 60mg per day! I had to stay on 60mg per day for 2 weeks I think it was, then started reducing by 5mg per month, till I got down to 15mg per day again. So that took me the best part of a year.

From there I followed my original reduction plan of dropping 1 mg every couple of months. However, when I finally reduced to 10mg per day the headaches came back and I was immediately put on 50mg per day! Since then I've managed to verrrrry verrrry slowly reduce till I'm now on 3mg per day, after a total of 13.5 years on Pred.

As such, from my personal experience I would say that trying to reduce Pred dosage by so much and so quickly is likely to trigger GCA, and that is no joke whatsoever.

Boss302Fan profile image
Boss302Fan

Not heard of it but think it’s the biggest joke. I had to recheck to make sure it wasn’t April 1st!

Let me counter with a question of my own: “What determines the dose of Prednisone necessary to alleviate inflammation that manifests as pain? The activity level of the cause of PMR, or a taper schedule?”

Let me give you a hint, it’s not any tapering schedule! The tapering schedule is an effort to determine what the dose of Pred’s that’s needed and find it without going below the activity, or being too much above that dose. No matter what you do with a schedule is not going to impact the level of PMR activity. But, what schedule you use can impact your level of discomfort!

If they got any someone off Pred based on that schedule then I highly suspect their condition was not PMR.

Sandmason profile image
Sandmason

That study is 24 years old and its the only one with that unrealistic schedule. Publish or perish is my guess. The best new one I've seen is at Uptodate.com, Clinical manifestations and diagnosis of polymyalgia rheumatica. It won't let me read it all now without a membership but I was able to read it all and print it a few weeks ago. It might work the first time you find it.

HeronNS profile image
HeronNS in reply toSandmason

I'm so disappointed that uptodate has gone behind a paywall, although I suppose there's a reason for that. I used to share the differential diagnosis page for PMR. No more....

Creas profile image
Creas

yes, my good Rheumy recommended that sort of routine: basically, as he explained, you can't just keep reducing by the same amount all the time because that would mean you were reducing by an ever increasing percentage. As you get to lower doses you need to reduce by smaller amounts. Think about it - reducing from 50-40mg is a 10mg reduction but only 20% while reducing from 2mg to 1mg is only a 1mg reduction but is a 50% reduction.

As you approach 7.5mg, you have to be very careful reducing as that's roughly the amount our adrenals produce when they're working (they produce that pred equivalent in cortisone) and they tend to switch off when you've been on pred for more than a few weeks and they won't kick in again just like that - you have to get them used to having to produce it again.

However I should say I never took more than 15mg and my inflammatory markers were never enormously high so I neither needed a very high dose, nor had problems coming down to 7.5mg which is where I'm at now. At the lower doses he has recommended alternating eg 7,7,6,7,7,6 one month then 7,6,6,7,6,6,7 on a daily basis the following month and 6,6,6,etc the next month so that overall the dose is reducing but only very slowly.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toCreas

Actually once you get below 7mg ish many find it's better to reduce by only 0.5mg a time... and once you get to 5mg or below its almost impossible to stick to the 10% recommendation - discussed recently in another post

percentage of 0.5mg reductions below 5mg

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