To taper or not?

[kathleen18]

I have tapered from 15mg to 9mg but could not get down to 8mg, so back to 9mg for the last month. Visited my GP yesterday and he says to stay at 9mg until March! It won't do me any harm! I was hoping/planning to reduce to 8mg very slowly next month and if successful carry on that way, so now I do not know whether to follow his instructions or go my own way! I suppose I could try and see, or do as I am told! Any thoughts?

[Charlie1boy]

Hi Kathleen,

Bearing in mind how many PMR sufferers experience difficulties tapering below 10 mg, including myself, my inclination would be to follow your GP's advice, even though you might not wish to do this.

You may get away with the reduction you describe, but in the long run, what is a few weeks if it saves you a flare with all that that means.Sounds to me you have good GP!

Good luck whatever you decide to do.

Paddy

PS: for sure others will be along with their advice.

[kathleen18 in reply to Charlie1boy]

Thank you for your comments

[DorsetLady PMRGCAuk volunteer]

Hi

Good advice from your GP - what a sensible person!

Stick at 9mg, it will help you stabilise nicely, help you through the “excitement” of Christmas, and the worst of the winter weather. And probably help you in the long run.

As we’re always saying - there’s no rush - your PMR’s not going anywhere soon!

And hang on to that GP!

[kathleen18 in reply to DorsetLady]

I am so glad you approve of my GP and now I can follow his advice with confidence! Thank you!

[DorsetLady PMRGCAuk volunteer in reply to kathleen18]

Hi,

So nice to hear of one that knows about PMR and has a sensible approach to it.

[Klah]

I thought the “rule” was, stay at 10m for one full year before starting to taper. Wish I had known that before I yo-toed thru that year! Especially during the holidays you will need the pred...not the time to taper. Be patient😊....PMR will not be on holiday!

[PMRpro Ambassador in reply to Klah]

That's for the Quick/Kirwan approach. They find it reduces the rate of relapses from 3 in 5 to 1 in 5. Which can only be a good thing!

[kathleen18 in reply to Klah]

So sensible, thanks

[PMRpro Ambassador]

I think you have a very sensible GP. There are rheumies who say not to reduce over the winter - cold weather doesn't help.Nor the stress of the holiday season.

It took me over 4 years to get below 9mg - with a lot of mini-flares in the meantime. I have never let anything get out of hand since.

The guy I saw 2 years ago when I had what eventually turned out to be just a flare told me not to worry and try to get back from 15 to 8mg by the end of the summer. I did - it is a lowish dose that should do little harm. And 1mg here or there really isn't much in the great scheme of things! If you have a flare and have to go back to a higher dose then the "advantage" your forced reduction gained you is wiped out in just a few weeks.

[kathleen18 in reply to PMRpro]

Yes, thank you, that all makes sense. I will carry on as I am and have faith in my GP! He is also very nice and easy to talk to. I get carried away with wanting to reduce the pills!

[DorsetLady PMRGCAuk volunteer in reply to kathleen18]

That’s natural, but you have to remember that so long as you have PMR you are going to need some pills, or course the doses gets smaller (hopefully) as you go along.

But it’s the PMR that decides when it’s time to go, not much anyone can do about that, except live with it, and manage it rather than let it manage you.

It different to most illnesses, and that’s what many people find difficult at the beginning, but once you accept it not going anywhere fast life becomes a lot easier.

[SheffieldJane]

Maybe get Christmas out of the way but generally I would follow my own instincts. It's your body. Your doctor is making an educated guess unless your bloods have gone haywire.

Perhaps GPs are relaxing a bit because Pred has proved to be less harmful than once was supposed at low doses.

[Oldman-1]

Hello Kathleen, Yes tapering is very much personal trial. It appears once a person has started down a test path and reached a point where it flares again, that is your rock bottom. So back up again to a dosage which works. Looking at many personal trials on here, the longer a person can keep away from a flare up, the better the chance of a return to normal, eventually.

[kathleen18 in reply to Oldman-1]

Thank you it is so helpful to have positive comments.

[navejasjoe]

Sounds like the same thing that happened to my wife a year ago when she was told by her first rheumy to toggle between 10 and 7.5.

Joe

[Hirwaen]

That agrees with my rheumatologist 'silver recommendations. When I get to 8mgs in Feb or March I am to stay on that dose for 6 months. The thinking behind it is that this condition is not going to go away any time soon, so appease it till you reach a reasonable time frame to lower your dose further.

This seems to me to be a realistic approach to a disease that is not going to go away any time soon!!!!!

[kathleen18 in reply to Hirwaen]

This is all so reassuring. I think that, like others, I did not really believe that I had a long term condition and that it would all be over in a few weeks. I am now beginning to accept the longer term situation and understand how it all works and to live accordingly with regular resting and pacing life generally. I suppose it is a good thing that I am constantly being told how well I look! All down to the pills! I must now learn to be a patient patient!

P.S. I like the Welsh name!

[Brandon47]

Started on 20mg 20 months ago now down to 4 - you must come off steroids very slowly. 4 is safe dose.