Tapering prednisone and PMR

[1Purplecrow]

it seems that tapering prednisone is a topic that could use its own thread. Let's give it a try, ...with experience leading the way, so "newbies" can locate the wisdom in one chunk!

First off...prednisone is the only drug recognized to treat this disorder called PMR!!!

Unfortunately, prednisone has a reputation among many, as a horrible toxic drug. I don't know where that reputation originated...but it is pervasive, and leads us to the topic at hand..belief among some, that they should immediately begin to taper off prednisone.

i have been prescribed short prednisone "bursts" of 2 weeks, as treatment for upper respiratory ails. It worked brilliantly, and as you know, the taper began at day two of the treatment. No problem.

Now... on to reality of prednisone prescribed as (the only) treatment for PMR!

The NAKED truth regarding PMR and prednisone, is that most people with PMR must continue using prednisone for years, not days or weeks. I am in year 4, on 6 mg prednisone, and still have miles to go.......

So to commence worry about tapering prednisone in the first weeks, is premature, and I believe, seriously contributes to the overall stress of learning to live with PMR.

It is also apparent that some (most??) doctors know little about PMR. When seeing a newly diagnosed PMR patient, they use the prednisone tapering protocol they may have been taught as appropriate for other disorders, which is absolutely inappropriate for PMR.

So, new PMR traveler...you are embarking on a long journey, which gets better with time. You will be both traveler...and teacher...using what you learn to educate others, and perhaps, even your doctor.

Tapering prednisone is not a science, but an art. It takes patience, tolerance and belief in the messages your body gives you. You will learn to read those messages and respond as appropriate for your needs.

This forum will be your lifeline...informing, comforting, and supporting you through the miles ahead...come here often, ask your questions, and share what you learn.

So, off we go.....

[SheffieldJane]

Good idea Purplecrow. There is a helpful link that PMRPro shares regularly that explains the Dead Slow Nearly Stop method that enlightened doctors also advocate. This enables us to gently and slowly get off Prednisalone and hopefully stay off it, unlike sudden drops in dose. You listen to your body using this method and halt the taper if the PMR symptoms begin to gather in a persistent way. You are also alert to potentially stressful situations, acute illness and accidents which would also interfere with a good taper.

[1Purplecrow in reply to SheffieldJane]

Thanks, the link is excellent.. my thoughts earlier were to facilitate an informal discussion with newly diagnosed patients. Helping them recognize that "tapering" is not the goal, but the end result of prednisone doing its job. It's not the race to the end, but managing the symptoms (inflammation and pain).

Thanks, J

[Charlie1boy]

I think that's an excellent summary of the situation Purplecrow, and it should prove very helpful to those newly diagnosed with PMR.

Personally, I had not known that prednisolone was regarded as

a " a horrible toxic drug". Certainly it can have some unpleasant side effects, but very few of us get all of them, and the most common would seem to be fatigue. Also, when we first get put on prednisolone, for PMR, we often refer to it as a miracle drug, so it's a bit of a Jekyll and Hyde!

I also think there is some truth about GPs thinking of pred as they do for other conditions for which it is prescribed. My son took it for chronic colitis, but for a relatively short time. Actually, I suspect that most doctors are pretty well ok on pred and PMR. We tend to hear of the problem cases on the forum, but there must be lots of PMR patients who do ok. From what I read on here, it is more often the rheumatologists who get the "bad" press!

Anyway, I think you've done a great job - well done. I would have appreciated something like this two and a half years ago in my early days of PMR. At least I was lucky enough to have an excellent GP Practice.

Paddy

[1Purplecrow in reply to Charlie1boy]

Thanks Paddy, feel free to add your wisdom to this thread. It was intended to generate comprehensive discussion with a broader focus than occasionally happens. I have discovered that gems of wisdom drop into threads, then get lost. Would like to capture and keep them accessible. 🤓

[jinasc]

pmr-gca-northeast.org.uk/as...

Page 3 History and Progress..........and two free plans, one by PMRpro.

Yes, 83 side effects of Prednisolone, but no-one gets them all. It has been around for so long that only two are missing from the list............'steroid brain fog' and 'treacle brain'.

Fatigue hits nearly all auto-immune illness and a good read is 'The Spoon Theory'.

Two books available and one DVD.

[1Purplecrow]

Jinasc, Excellent references, including the spoon theory.

Thank you, Jerri

[DorsetLady PMRGCAuk volunteer]

Hi,

Very good, and I'm sure it was an oversight, but - no mention of GCA!

We may be in the minority - but the same treatment and approach apply - newbies may not realise that both illness can be inter-linked if it's not stated in the advice - particularly if problems arise with tapering and too little Pred is taken.

PMR patients need to be aware of its potentially nastier accomplice.

[jinasc in reply to DorsetLady]

I agree with you............but I am so used to another site....where automatically at the end of your post.............comes this:

GCA: Feb 2007 - Remission 31 Dec 2011.

It's Not What You Gather, But What You Scatter That Tells What Kind of Life You Have Lived, Let's scatter a little good.

Yes, you put what you want in your profile box and it is automatically added at the end of every post.

It is an extremely useful addition, as it instantly tells you the start date.

During the time before remission, I added the current does of pred.

This factual imput gives you the ability to know exactly, date, pred etc so when responding you have a clues.

[DorsetLady PMRGCAuk volunteer in reply to jinasc]

Hi jinasc,

That's a good idea. It would be useful for everybody to have that info come up. Newbies could then see how long people do actually have it, or did have it - as compared to what the doctors tell them!

As you say, very useful when answering posts, I very often find I get half way through an answer and then have to check back when people were diagnosed and what their starting dose.

[markbenjamin57 in reply to DorsetLady]

I agree...

[PMRpro Ambassador in reply to DorsetLady]

And they didn't write anything in their profile!!!! I would like a few basic facts - including country - that we all have to supply. Diagnosis and when at the very least, intermediate history is also essential to make a sane and meaningful response at times!

[markbenjamin57 in reply to PMRpro]

I agree...

[DorsetLady PMRGCAuk volunteer in reply to markbenjamin57]

See reply to chief Auntie 😉

[markbenjamin57 in reply to DorsetLady]

The Man from Auntie...? I'm truly honoured... :-D.

Think you might have a point about Data Protection but the idea makes a lot of sense.

[PMRpro Ambassador in reply to markbenjamin57]

All you need is a date and whether it is GCA or PMR - after all, if someone belongs to this forum you'd assume they have one or t'other!

On one forum we have a strap line to our profile - which comes up at the bottom of each post.

[PMRpro Ambassador in reply to DorsetLady]

You talking to yourself again? You're the senior Auntie!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Do you mean age wise?

[PMRpro Ambassador in reply to DorsetLady]

And you had GCA - I just have PMR...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Not just! I'm always very conscious not to say that! It's like saying I'm just a wife, or just a mother!

[PMRpro Ambassador in reply to DorsetLady]

PMR compared to GCA is a "just" - even after 13 years of it, I haven't changed my mind on that point. PMR is a pain in the anatomy, in some ways it probably hurts more - but it does not cause life-changing damage. GCA is the senior diagnosis.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Perhaps we Aunties ( including honorary[!] male) should suggest to Administrators that a bit more info would be nice. Although I guess they'll probably spout the DATA Info Act at us!

On a slightly different, but similar subject, I tried to amend my profile earlier - had to leave it for a dental appointment - saved it twice- no change!! So now Im back, going to have a coffee and try again. Then if it doesn't work might as the experts why? - don't hold your breath.

[PMRpro Ambassador in reply to DorsetLady]

Which millenium were you hoping for a response?

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Haven't asked the question yet!!!

Just tried again, and managed to delete old profile notes, doesn't seem to be too keen about taking new ones though.

Don't know why I'm bothering really... but I will not let a bit of technology get in the way --- although it's a good job I'm on PC at moment - tablet would have been flying by now. grrr!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Update -- don't need one!

I think I might have lost the will to live!

[Hidden in reply to DorsetLady]

I have tried to up date profile too several times. thought it was me

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

I've done it before and its been okay - perhaps its just today!! wishful thinking

[Hidden in reply to DorsetLady]

I have tried a few times since I joined. just to put a bit of stable info. Will give it another go. sometimes wontnlet me delete my second thought messages too lol

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Update - just done it!

[PMRpro Ambassador in reply to DorsetLady]

What's next now you're on a roll?

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

One can only do so much in a day you know!

The few brains cells still functioning do need a bit of R&R.

Even Super Aunties need a rest occasionally 🤔

[Hidden in reply to DorsetLady]

Looks as if you aunties have the same trouble as me. Bought a new pc and mobile and lost everything. Had to rejoin with new name. Wow is me 🤔😱😵🤡

[1Purplecrow]

You are so correct, ! I am hardly the expert on any of these topics, and hoped those of you who have more experience, education and information will weigh in.

Not to mention GCA was a terrible oversight. That condition is really the big one, with dreadful consequences if not treated quickly!!

The early stages of these disorders are so confusing and anxiety loaded.

I welcome everyone to jump in to fill in my info gaps. Thank you, Jerri

[Sandy1947]

Your post comforts me on my 3 month PMR journey. I am tapering from 25 mg. I have been doing a 2 week decrease alternating every other day with higher and lower dose then one week of new dose before next decrease. I accidentally took lower dose a week too soon. When I realized my mistake (which are many with Pred head) I decided to stick with it. After a bit of an adjustment, I feel OK. Is it advisable to try next decrease in a week and go back up if I'm miserable? I know I won't be this adventurous when I'm at 15 mg or less and will def uses DSNS method. I'm building PMR confidence muscle in tapering trials and tribulations.

Couldn't be this strong without help from forum friends. Thanks everyone.

[1Purplecrow]

Hi Sandy, it sounds like you are doing fine with your taper program. My personal approach was to complete a taper drop, then settle on that level for a while. I think its really important to embrace the reality that this taper business is really not a race to zero, but a process for reducing the prednizone dose as our body no longer needs that amount.

it sounds like you are doing well, I would just continue the schedule you have set up.

Kind Regards, Jerri