Doctors 😬

[Rocketronzy]

Thinking about it they gave me. A 6 week program to get down on my Pred.

From 15 to 0 in 6 weeks. AND NO MENTION OF WHAT IF. 😱

I'll just go for it.

[Rose54]

Good luck with that one

GPs don't have to live with PMR

its up to you what you do

Just glad its not me

6 weeks to drop 1mg is my limit

[Rocketronzy in reply to Rose54]

And what are you at now. And what have you come from.

🍀

[Rose54 in reply to Rocketronzy]

Hi

I started at 15 in Aug 2015 got down to 8 Easter this year with no problems then had a flare had to go back to 15 and so have been reducing last 6 weeks

first 3 weeks did 1 a week but back to dead slow but only .5 at a time

[Rocketronzy in reply to Rose54]

Sounds like me I just feel worse taking less than 15

When I was back to 15 badgers me to start reducing straight away

It's hopeless

Thanks 🌹

[Blanksia in reply to Rocketronzy]

Patience & perserverance! No other way works

[Rocketronzy in reply to Blanksia]

😤 that's what I'll say to them.

They bang on about bones & etc. 😲

[PMRpro Ambassador]

If you mean you are going to try the reduction, please write out a small card for your wallet saying your steroid history, i.e. that you have been on them for 5 years and have been told to reduce 15 to zero in 6 weeks. And please make sure that, if you feel ill or become confused, someone will dial 999 and tell them that history. You can't be too careful when stopping pred that quickly.

[Rocketronzy in reply to PMRpro]

Thanks for that sound advice I will do that. I have been to A&E once before with that problem. A few mouths back. It felt like an heart attack. After lots of test they said looks like a flare of my pmra.

The RUMI. I saw later poo pood that. 😲

Weel see

Thank and all the best. 🍀

Ps I was on 5 mg then.

He said treble it.

[Patience_1]

I know I'm relatively new to this game, and it sounds like you're an "old hand", but... I think I'd be trying to transfer to a new rheumy, and certainly checking my gp's views - especially in light of what you say about having to go to A&E.

I started at 15mg almost a year ago, and am now just trying to taper to 10mg but I've been there before and failed. I can tell that I really need to be on 10.5mg at the moment. Doesn't your rheumy accept that the inflammation is currently at the level it's decided to be at and there's little you can do to influence that?

[Rocketronzy in reply to Patience_1]

When I see them I have nothing to show it's early hours when I suffer. I have no Rumi now.

Nothing shows in blood.

I just feel now they don't believe me.

One of my symptoms really bugging me is pain across the eyes.

But after I've had my pred.

It all settles down.

[Blanksia in reply to Rocketronzy]

Wow! Google GCA & treble the dose as told! Don't mess with your sight!

[Rocketronzy in reply to Blanksia]

One morning when I was on lower dose of pred l had all the symptoms of GCA.

felt rough even vides it. Went into panic mode upt dose to 25mg buy the time I saw doctor. Nowt to show then. 😲

Stangle she said if your not showing symptoms the Rumi would dismiss me and that's what happened.

Not Evan benefit of the doubt. 😬

I was dumb struck.

[Patience_1]

That's the problem with pmr isn't it - once you're on pred blood markers and mobility should be fairly normal, if the dose is adequately managing the symptoms. I must admit that I have often felt defensive when trying to explain to my gp why I haven't been able to follow her reduction plan. I've twice had to resort to getting her to spell it out that, however much we may want to reduce the pred, it can't be done unless the pmr has subsided enough. Strangely, she seems to forget those conversations when I come back for a new prescription!

You may have thought all this through, but what about the timing of your dose? Are you perhaps one of those people who would benefit from taking the pred in the early hours to counteract the daily onslaught of the inflammation? Or maybe you would benefit from splitting the dose into morning and evening? Sorry if I'm being obvious, but I don't know your history.

You mention pain between the eyes - please don't take any chances if it feels like it could be gca, but get medical advice. Better to be thought a fraud or a panicker than risk your eyesight!

[pszak72]

I also am one who benefits fron taking Pred at 3:30 am. Seems to reduce symptoms while tapering the dose.

[Nap1]

That's not a good thing to do. Take it from me that reduction so quickly in steroids can wipe you out. If they only looked at their little computers they would find how wrong they are