PMR tapering

[Smilie67]

Hi there, I had polymialgia for nearly 2 years, it started August 2021 and by June 2023 I was polymialgia free.I too started with 15 mgs of Prednisalone and I found by the time I got down to 6-7 mgs the key was to go dead slow with tapering. I was doing it by 0.5 mgs every 4 to 6 weeks and that way I was able to keep going until I got down to the last 0.5 mg. It worked for me but I know everyone is different.

I wish you lots of luck on your journey, and hope you will soon be doing as well as I did.

Kind regards Pat.

[PMRpro Ambassador]

Good to hear a success story.

[SheffieldJane]

Thanks for sharing.

[Bcol]

It's always encouraging to read good news.

[Zebedee44]

Congratulations on being a text book case, Smilie. I think we were all hopeful at the start of our PMR journey (I know I was) and it’s good to know that for some lucky people the two year prognosis holds true.

[Thiago1396]

great to hear, I’m at 7.5mg since starting on 20mg last May. Now reducing by 0.5 every 5 or 6 weeks. 🤞🤞

[Fifebornlass]

So good to hear of someone recovering. I have had PMR for 5months now and sometimes feel that this is my new life which is very limited. I love walking, but feel I can only walk for15 to 20 mins before I need to rest. I also used to look after my grandchildren (4 year old and 18months) but find it too difficult now. I started on 15mgs then tapered to 11 after 3 months. Then I caught a virus and was floored so went back up to 15mg again. I am now taking 13mg. If I rest and do very little I am pain free and feel fine. Thank you for sharing your recovery path it is encouraging x

[PMRpro Ambassador in reply to Fifebornlass]

I found I could walk much further if I planned it carefully so there were targets where I could sit - walk to a cafe, rest, walk further, lunch, repeat on the way home. Park benches also do if there are any. There is a superb restaurant about 45 mins walk from me, unfortunately with a steep incline and no bus to the door, Back before Covid, I and my husband walked up there, had a leisurely 2 hour plus lunch and then walked back having recovered from the walk out there. No way could I have walked the 1 1/2 hours in one.

And the ultimate is a rollator with a seat. It carries your coffee in a flask and some other refreshment and you can stop anywhere for that rest!

[kangaroojohn]

Did you have any fatigue, mood swing or light-headed symtoms on the way down from 6-7 mg and if so to what degree please? I am having these symptoms substantially on a very slow taper currently at 4.5 and am trying to decide whether it would be best for me to put up with them or increase the dose of pred

[Smilie67]

Some days I did feel more tired than usual but always had enough energy to fit a good walk in. I became pre diabetic too, I think the steroids encourage that, but otherwise I think I was lucky in recovery. My glass is always half full in life so it I tend to focus on what I can do rather than worry about all the things I can't do, please don't get me wrong, I understand everyone deals with it in their own way. Give yourself a pat on the back if you're still managing to reduce however slow it may be. Feel free to keep in touch, I'd be interested to hear about your journey.

All the best Pat

[PMRpro Ambassador]

Did you mean the question for Thiago? I understand them to be at 7mg for the first time - they've only had PMR since early 2023.

[kangaroojohn]

Thanks Smilie67 for you response and offer of further help

[Smilie67 in reply to kangaroojohn]

You're more than welcome, I sincerely hope you'll get down to zero steroids it just requires a bit of patience and believing it can happenWishing you all the best

[Colleen1974]

That’s so wonderful to hear! I started 20 mg of prednisone Sept 2022. Hit a snag at 7mg last summer and have been on a very slow taper since. Now at 3.5 and will stay on 3mg the rest of the year. Have a busy summer and Med cruise in Sept/October. Not risking a flare! As I tell my GP and learned here “it’s not a relentless race down to zero.” My favorite phrase.

[Missus835]

Thanks for sharing. What a success story! Very encouraging. 🌷