What should my expectations be regarding Prednisone and PMR?

[RaisinBran]

First, let me say that this site and all that have responded to my woes, have helped me tremendously through my PMR for the past 7 years. I have been tapering from 8mgs of prednisone and am now down to 3mgs over the past year. It has been a very slow process and I have been tapering by 1/2mg every 4-5 weeks. Does this sound normal? Have other patients had similar difficulties tapering down to zero? What is the average amount of time that those that have PMR are still on prednisone? Are any patients on higher doses of prednisone for longer that 7 years?

I'm sorry, but I am so frustrated! I have been on 3mg for the past 3 weeks and I can hardly walk, let alone bend and get up. I have been pushing myself in hopes of forcing my adrenals to catch up, but this is just too difficult to continue. This has been a continuous journey from 15mgs at the start to 3mgs and below for the past 7 years, only to jump back up again and start all over.

Should I jump up to 5,8,10mgs again? Thank you again for all of your support!🙃

[DorsetLady PMRGCAuk volunteer]

I’d treat it as a flare - see link.. and once sorted out, return to 3.5mg not 3mg.

healthunlocked.com/pmrgcauk...

And honestly there is no point in trying to force adrenals - they will start to work when they are ready -have you have a cortisol test to see if they are able to. In some cases they don’t, so if you find yourself in that situation you will be on another form of steroids to help.

But worry about that on another day, for now get the flare sorted.

[RaisinBran in reply to DorsetLady]

Thank you - that helped

[PMRpro Ambassador]

I just posted a reply about the length of PMR so please go and have a read of that to put your 7 years and dose in context:

healthunlocked.com/pmrgcauk...

What do YOU call "higher doses" of pred?

It is clear that 3mg is too low a dose to manage YOUR PMR inflammation at present. Below 5mg you have 2 factors to balance: above all, you need the dose that manages YOUR PMR if it is still active, and I would say it obviously is. But alongside that, you are wanting, hoping, to be low enough to encourage your adrenal glands to start to wake up and smell the coffee. But that is really a seocndary consideration, On top of that, I hate to appear to be ageist, but as we get older, things get a bit worn out, and that means the HPA axis, the control system behind the adrenals, is also a bit wobblier and may not be able to leap out of bed as it would have a few years earlier.

And my perennial cry: you are NOT reducing relentlessly to zero pred. You are titrating the dose to identify the LOWEST EFFECTIVE DOSE. For you currently that is obviously 3,5/4mg, Any less and the inflammation builds up again until you have symptoms. Pred isn't a cure, it is a management strategy and management strategies have to be employed in full to work, try to make cuts and it will go wrong.

[RaisinBran in reply to PMRpro]

As always PMRpro- you tell it like it is! thank you. That helped.

[PMRpro Ambassador in reply to RaisinBran]

Got to live up to my reputation!!!

[RaisinBran in reply to PMRpro]

For sure!!!! I just love that you are on this blog!!!!

[Groggrim in reply to RaisinBran]

RaisinBran PMRpro always tells it like it is. I would not have it any other way. Has helped me out of some scrapes along the way.

[RaisinBran in reply to Groggrim]

👍👍

[Zebedee44]

Hi, does it help to know that eight years into PMR I am stuck at 3mg and my very understanding GP has said that I will probably be on that dose of steroid for ever?

This has taken the pressure off and I feel I am no longer dicing with the challenge of adrenal insufficiency. But this is a new outcome for me and I’m not altogether comfortable with it. Being rather contra suggestive I will inevitably press on with a slow taper when I am ready, but the pressure is off.

It’s good to get confirmation from my doctor that a daily dose under 5mg of pred is safe long term. I don’t like it, but it’s reassuring.

[RaisinBran in reply to Zebedee44]

wow! That is very helpful and reassuring. I had heard that from my GP also, but not from my Reumy. Thank you very much for that info!!!

[Busyrobyn]

Hello Raisin Bran,I see like me you belong to the older generation.

I have been on Prednisolone for about 14months.I started on 15 mgm which had an almost instant effect.My tapering path way has been fairly smooth although I had quite a battle with some staff at my NHS surgery . At below 10mgs I wanted to taper in half mgm steps.I constantly battled against "we want you off steroids in 2 years You should taper at a 1 mgm a month".However,I continue to taper in half mgm steps managing 1 mgm in 4- 6 weeks (approx) .I follow the thought that if we have pain think carefully before reducing the steroid.

That went very well until was about to take 5mgm. I had pneumonia and PMR dose was raised to 10mg but PMR still managed a very painful flare.5 weeks later I am back to 6 mgms and working in half mgm steps again.

I have no PMR pain and don't move on unless I am pain free.

How my adrenal glands will feel as the dose reduces I will see and need advice at that stage .

As I understand our situation.

The steroids are not a cure but just a means of managing our pain as we try to find the lowest dose our body finds acceptable.I try to be patient and accept that my old body is doing its' best but always hoping,of course, that we may eventually have complete remission.

I tell myself daily that it isn't a race just another challenge on life's pathway.

My thoughts

I am sorry to hear how uncomfortable you are.

Is your pain due to PMR or something else?We are likely to have arthritis or other rheumatic problems as well.

Take care and be patient with yourself

[RaisinBran in reply to Busyrobyn]

Thank you sooooo much Busyrobyn.