delighted to be at 1.25 mg where now??

[Bubble56]

Diagnosed with PMR 5 1/2 years ago. It has been a roller coaster journey Pred- wise now at 1.25 mg and all tests “ normal” range…yay! I am 69 and have just been on a ski holiday and skied a few days- not a lot but enough to help me feel good about myself again. I am having difficulty getting below 1mg and, unlike so many of you are experiencing, my GP has been fantastic. He said that if I can get to 1mg and stay there for a while it was not going to do much harm.

My question is has anyone got to 1mg and struggled to come off Prednisolone completely ? How long is it ok to stay on a low dose?

As always your help is invaluable.

[SnazzyD]

What happens when you “struggle”. I ask in order to differentiate if possible between adrenally related issues or flare type issues.

[Bubble56 in reply to SnazzyD]

By “struggling “ I mean, piriformis and shoulder discomfort. The Polymyalgia type ache( sorry to be vague but I am sure you understand what I mean!).

I have had an mri scan done on my back and it shows arthritis, bulging discs and nerve impingement so perhaps it is is nothing to do with pmr🤷🏼‍♀️. I do feel better at 1.25 so for now I will just stay there.

Thank you all for your replies, helpful and comforting.

[PMRpro Ambassador in reply to Bubble56]

Then you need to go back to the last dose where you DIDN'T feel that. Even a tiny bit too low leaves inflammation uncombatted each day and like a dripping tap fills a bucket, it will build up until you feel it There is no virtue in not being on enough pred - especially if it is only a small amount. But a miss is as good as a mile - it will all end up in the same place.

[Bubble56 in reply to PMRpro]

You have really reassured me. You get answers on here that you cannot get from anyone else. Thank you so much.

[PMRpro Ambassador in reply to Bubble56]

That is our aim!

[Charlie1boy]

”has anyone got to 1mg and struggled to come off prednisolone”

Well, I certainly did, and I’m sure plenty of others have too. I first got to 1mg on 18th January 2020, but didn’t get successfully to zero till 1st October 2022. I twice got to zero before that date, but the PMR decided it wasn’t finished with me!

Think your GP is correct. There is really no hurry, and5 quality of life is paramount.

[Bubble56 in reply to Charlie1boy]

You are so right- quality of life is crucial. Thank you.

[piglette]

There is no reason why you should not stay on 1mg for life if need be. Don’t feel pressured to get to zero. You could try taking 0.5mg.

[PMRpro Ambassador]

"has anyone got to 1mg and struggled to come off Prednisolone completely"

Many over the years. And that your blood markers are fine only means that at present 1,25mg is enough to manage any inflammation being created by a very minimally active disease process. Even 1/2mg on alternate days can do that so it isn't all finished until you have got to zero pred and been off it altogether for 6 months or so - it really can take that long to build up in some people.

I have been on pred for 16 years, a lot of it at above 10mg. It hasn't caused any real problems we can identify. If I got to 1mg I'd be in no hurry to get off it!!!! After that long it is very unlikely - much more likely I will need the 7mg I am on now for life.

[DorsetLady PMRGCAuk volunteer]

Same question as SnazzyD … and no 1mg won’t do much harm… so staying there for a while might be good idea. But is it PMR or adrenals stopping you reducing?

[Bubble56 in reply to DorsetLady]

PMR I think Dorset Lady. I am not lacking energy or excessively fatigued which I was at 7 mg!!!

[DorsetLady PMRGCAuk volunteer in reply to Bubble56]

Ok, seen your reply to SD - so hope current dose sorts it… and continues to do so. As said no great issues at that dose …but just make sure it really is enough.

[Bubble56 in reply to DorsetLady]

Thank you very much 😄

[Skier321]

I have had pmr for almost 4 years. I have gotten down to 1 mg twice now and then had a flare trying to go to a half. I will stay at 1 for a few weeks or a month before trying to go to 1/2 on the slow taper mentioned here

[Bubble56 in reply to Skier321]

Good luck . Thank you for sharing.

[PMRpro Ambassador in reply to Skier321]

I would stay there for a few MONTHS. The more you push to get lower and flare, the harder it becomes to get the flare under control and then reduce the next time. No idea why but it is so ...

[Bubble56 in reply to PMRpro]

Definitely will take your advice. Thanks 🤩

[Lookingforideas]

Hi there,

like you I was very lucky with a great GP who pretty much allowed me to ‘do my own thing’. I did gain a bit of ‘insurance’ by always only admitting to a reduction a couple of weeks after the event, thereby obtaining an emergency ‘stash’ of unused pred (just in case that situation changed😊).

So, after I was stable on one mg for at least 3 or 4 months, I started (for another approx 18- months to 2 years, - I can’t access my old diary at the moment to check dates) to do my own VERY SLOW & elongated version of the great reduction plans on here - assiduously chopping tablets and alternating doses but the lower I got the slower I went - and that mega cautious approach worked wonderfully for me. I’ve been completely off for about a year now I think, maybe a bit longer (wish I could find that diary 🤦‍♀️) and so far all is well. By the end months of the final year I was chopping the tablets into approximately 1/4s and gradually reduced even them by skipping more and more days between them as per the recommendations on here. Do you agree with my husband that I was totally OCD about it? Moi? 😂 I was ridiculous to be honest - just too chicken to totally stop until I was on approximately 1/4 a WEEK!!!🤦‍♀️For at least couple of months 😊

I am aware it could happen again so I still have a little stash of pred that I carry around with me when I’m travelling - just in case anything seems to be starting - but it’ll be going out of date soon I think 🙄. That’s a good thing though & I hope I won’t need to go back for more 🤞

[Bedwell in reply to Lookingforideas]

Well done you for your patience? ! That word is not my middle name!!!!

Cranial Osteopath suggested I waited till summer before reducing any more! She said some people find it easier. Been on 1 mg for 3 months now.. have a pill cutter.. and even reducing by a quarter and I felt wobbly and not quite able to cope.. GP says you can stay on 1mg for ever?! Am 86… but will try reducing again in a few weeks time.

Got a trigger thumb?! Has anyone had that when reducing? Maddening! Can’t even write properly!

[Bubble56]

Your reply has made me giggle because I understand the OCD part!!!Also I am afraid to come off it completely because I absolutely dread the thought of having to take a larger dose again.( My old clothes only just fit me now and that may sound excessively vain but I had an eating disorder when I was a teenager and apart from the physical pain of PMR it has all taken its toll mentally 😩)

[Lookingforideas in reply to Bubble56]

Yep, I was exactly the same - not the eating disorder thankfully, (that must be horrible too 😊) but definitely afraid to take the last steps in case I relapsed. Slowly slowly (mega slowly!) at that very low level is definitely the way to go. As PMRPro always says, if you go too low too soon the inflammation buildup is like a dripping tap, till the ‘bucket’ overflows and you’ve relapsed 🙄

[Bubble56 in reply to Lookingforideas]

I wouldn't wish PMR and all that goes with it on anyone but it is a relief to know that others are experiencing the same problem. I wish everyone who has replied all the very best!!! Thank you.😁

[Bennijax]

Well done. I'm also 5.5 years since dioagnosis but I'm just tapering to 10mg and onward to 9.5. I am so pleased for you.

[Bubble56 in reply to Bennijax]

Thank you that is very kind of you and your message much appreciated. You will get there too!!!🤞