To taper or not?

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.

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!

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!

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.

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.

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.

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

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!!!!!

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