Stopped taking prednisolone: My PMR journey started... - PMRGCAuk

PMRGCAuk

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Stopped taking prednisolone

15 Replies

My PMR journey started December 2019. As covid started soon afterwards and there was no support from the local surgery, Health Unlocked was an absolute godsend. I would therefore like to say a big thank you for the helpful feedbacks received and really did appreciate all the replies for peace of mind.

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15 Replies
Wouldlovetorun profile image
Wouldlovetorun

Good morning Dorsetgirl17! 🤗 what fantastic news! So pleased for you. Lovely news😊x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Good to hear on a personal level, and to remind new patients and/or those struggling there is a successful end to PMR …. and why we are here to help. 🌸

123-go profile image
123-go

Excellent news: so pleased for you. Thank you for letting us know. ⭐️

PMRpro profile image
PMRproAmbassador

But you don't have to leave!

in reply to PMRpro

No, don’t think I will leave, automatic to open up at breakfast time

SheffieldJane profile image
SheffieldJane

Really encouraging news. We were less alone during the pandemic weren’t we?

powerwalk profile image
powerwalk

Hope you keep well. Best wishes.

Portobello profile image
Portobello

Yes, I too was finally diagnosed in August 2019 and relied heavily on this wonderful forum for support. I tapered off pred around my 75th birthday in May this year. I haven't posted about it or left the forum because I always have a sneaking suspicion PMR is lurking, ready to jump on me! There have been a couple of wobbly times when I was sure it was back- for example- I have persistent neck ache at the moment. But I keep on keeping on, hoping I'm free (though I'm dreading the test of the COVID & flu boosters just round the corner 😩).Wish me luck and thank you all for helping me get this far 🤗

PMRpro profile image
PMRproAmbassador in reply to Portobello

Fingers crossed xxxx

in reply to Portobello

Looking at your PMR journey, my timeline is very similar to yours. I too am dreading the covid/flu jabs might trigger a return. Be interested to hear your reaction. I find my stiff neck protests after lifting heavy shopping bags or large garden pots. Still do daily Physio exercises with rubber band over door and neck rotations, which gets a reaction from husband walking past window as he wants to throw a ping pong into my mouth like a fairground dummy. Anyway, take care.

Lonsdalelass profile image
Lonsdalelass in reply to Portobello

I tapered off May last year, but still hoping and warding off any comeback of PMR, as we can never be too sure....".once bitten" etc. Keeping fingers crossed for us all.

Gossiplady profile image
Gossiplady

Well done Dosetgirl17! Wonderful news, So pleased you are saying with us. I am down to 0.75 mgs , two and a half years tomorrow. Very very slow now, But not bothered as the dose is so low and so far I feel fine. Keep smiling!

Broseley profile image
Broseley

Congratulations! I'm so glad you're off the pred, thank you for letting us know. We're all now inspired to follow your example! I'm hoping to be off by the end of January 🤞

cranberryt profile image
cranberryt

congratulations!

MarkyMark60 profile image
MarkyMark60

I also got Pmr in 2019. Tapered up and down until totally off in June 2022. Not feeling totally back to before Pmr but not bad (sort of like an old man)0. Then in Aug this year I got attacked and stung by 5 bees. I went back on 20 mg prednisone for 7 days then tapered 10, 5, 2. At 5mg I felt great again. Like I felt before Pmr. I continue down to 2 mg and continued feeling great. No neck or shoulder pain. Under 1 mg I start feeling lousy. Even though my sed rate is 2 and CRP was 6 without pred the Rheumatologist sug that I stay on low dose pred if I want to feel good. Every now and then I go off pred but hate to feel like that all the time. At 79 I decided to keep feeling good as long as I can and 1 to 2 mg seems to work

Hope this helps you!

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