Been wondering about this for quite a while

[Theziggy]

So - PMR usually has a lifespan of between 2 - 6 years and more, so why do they put you on a steroid tapering plan that will get you off them inside a year - what do you take for the other 5 years?? Just doesn't make sense to me!

[Hidden]

Usually anger, frustration, stress and a constant battle to have a medicine that costs pennies. A drug that if used effectively can be slowly tapered to reach what is a "natural" dose of the chemical our bodies need. I suppose a gp can't keep up with best practice on everything but once they have a patient with a condition they should at least become conversant with the most recent information and research.

[Hidden]

Now that Ziggy is the 64,000$ Question!...

Most Rheumatologist’s start you off at 15mg for PMR (now it’s often 20mg) & recommend a tapering dose suggesting you’ll be better & off the Pred in two years.

But as most of us know this is not the case & we remain on Pred far longer.

For Me ~ 7years & counting! Currently on 10mg after stopping Methotrexate due to Liver Issues.

[DorsetLady PMRGCAuk volunteer]

Mainly due to the hate/hate relationship most doctors seem to have with steroids! Plus the thinking when most of these “official “ tapers were designed was that PMR had under 2 years duration - and all patients were over 70. But is doesn’t and we are aren’t!

In an ideal world, the taper might just work, but we don’t live in an ideal world!

A short sharp dose of steroids does work for other illnesses but not ours, and I don’t think doctors like that.

[SnazzyD]

I suspect many reasons. It takes a while for new research to turn into common practice I think. Partly because in order to take notice it needs to be replicated a few times, partly because many docs have an ego problem and don’t like to learn (especially from the lowly patient) and partly because it is a Cinderella subject that doesn’t attract much attention. Whether that’s because it is a condition associated with the elderly and not a more valued younger group (sorry) I don’t know. PMR seems to be seen and worn as a failing rather than an affront like cancer and seems dealt with wearily. Add to that gold standards and guidelines that take ages to change and not to ahere to them is risky for the doc. However, it begs the question why some don’t come close to any guidelines. It then demands the patient go against it so they can put in the notes that it was the patient's refusal/insistence t their clinical judgement. The system doesn’t favour mavericks for good and ill. Sorry docs, but as a profession I think it doesn’t attract humble, flexible thinkers and those who are shine like beacons. Having worked in the health care area it does seem rife with modern day ‘old wives tales’ and assumptions that stick for years. That was supposed to have been done away with by evidence based practice but I guess it’s human nature plus the fact that evidence changes so often that I think it is overwhelming and well worn assumptions are easier to deal with. Pharmaceutical firms push fancier drugs that can seem like a simple solution but everything has a cost and Pred’s cost is well known. Where would we be without the tireless champions in the medical profession and those who are caring and open enough to embrace being surprised.

Sorry, that touched a nerve didn’t it!

[PMRpro Ambassador]

A misunderstanding. An early-ish study claimed in its write-up that PMR lasted about 18 months. That has been extended to a bit longer and most later work claims it lasts "at least 2 years" . The just under 6 year figure is relatively recent - when the work was presented at a US rheumatologists meeting this video was posted:

rheumnow.com/video/dr-kathr...

where the doctor says clearly that they will have to revise their ideas.

But they mostly only keep up-to-date with what they perceive as "interesting" or exciting new approaches that will make them appear wonder-healers. I'm sure that is why some doctors are so keen on Actemra. There is this terror all over about corticosteroids - and it isn't a cure, PMR can't be cured but they believe it goes away soon so why worry about a few months of pain and disability? That they will hand back to the GP anyway more often than not.

And then - Snazzy has said all the rest ...

[PMRpro Ambassador]

They are 2 separate factors. The inability to get off pred in secondary adrenal suppression is not necessarily due to the PMR although it can be both. The synacthen test shows if the adrenals are capable of producing cortisol. That's the best you can get. The symptoms of PMR and adrenal insufficiency are not particularly alike. There is also no fixed time for the adrenals to recover.

There is no point worrying about the things over which you have no control. You taper the dose of pred slowly - if the PMR is under control you will have few problems providing you go slowly. Once you get to the realm of returning adrenal function the same applies - if the PMR is under control you will be able to reduce. If it has gone into remission then you definitely won't have PMR relapses but you still have to reduce slowly to encourage return of normal adrenal function without too many adverse effects. Most people get off pred if they go slowly - some won't or it will take a bit longer.

But don't try to cross bridges that don't exist. Just take your pred and reduce the dose and see how it goes while getting on with life. The point of the pred is to allow you to do that. I don't even think of a day when I might get below 5mg pred - it just builds you up for disappointment when PMR points out it is still there.

[Hidden]

It's very easy to look up the symptoms of both online. Like all immune/hormonal conditions I there will be overlapping symptoms. In my simple mind the relationship between pred and adrenal is that pred "replaces" cortisol production that the adrenal gland normal provides for the body. If pred is reduced slowly then the adrenals hopefully/usually start to produce cortisol /hormones again. If you suddenly stop pred after a while on it at PMR/GCA doses then the aDrenal isn't given the opportunity to start producing. Unfortunately some people might have a sluggish adrenal process regardless. I might be totally wrong! I know my Rheumy checks adrenal function at 3 to 4mg of pred.i will worry about adrenal function then. 😓

[Hidden in reply to Hidden]

I have given myself a headache 🙄

[Theziggy in reply to Hidden]

You should take a steroid for that

[Hidden in reply to Theziggy]

🤣🤣🤣

[PMRpro Ambassador]

As Poopadoop says it isn't difficult to look them up online. Same as I would have to to be sure I'd got them correct.

[Mlangston]

Me neither! Took me 6 years to come off Pred and many ups and downs along the way. However I have been in remission for 2 years now so whatever, hang in there, believe me it will have been worth the struggle! Maureen

[Lejazzhot]

Same question. Ive beeb on ored sunce jan 11.2019. Rheumatologist Fast tracked tapering.

[IdasMum]

Frustrating non?

I often have a broken French convo with the pharmacy assistant when she questions my dose. I wish my French was much better, it would so much easier to explain.

Last time I talked about the tapering list being a goal not an exact thing. It took us a few minutes to work out the word for goal in French. (but)

I am just relieved I have a large quantity of 1mg tablets if ever I have a pharmacist wanting to stick to the list rigidly.

[PMRpro Ambassador in reply to IdasMum]

My guess was objectif! Thinking of different words that mean the same does help

goal, aim, objective ...