club zero: thought I’d update to say I’ve been off... - PMRGCAuk

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club zero

Pongo13 profile image
10 Replies

thought I’d update to say I’ve been off steroids for two weeks. A new bus pass recipient, I’m at an age where some aches and pains are to be expected so wasn’t expecting to return to youthful energy levels etc but….so far so good. And all achieved over these years with help from this site (and minuscule input bordering on reluctant from GP). So thankyou everyone. Fingers crossed this continues.

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Pongo13
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PMRpro profile image
PMRproAmbassador

"Fingers crossed this continues." - indeed! All the best.

But exerience compels me to remind you that 2 weeks is VERY early days!!!

Pongo13 profile image
Pongo13 in reply toPMRpro

Indeed! I’m praying! X

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

All the best. 🌸

Charlie1boy profile image
Charlie1boy

Good luck. Hopefully it lasts for you.

whitefishbay profile image
whitefishbay

Good luck🍀

Poppeye profile image
Poppeye

Welcome to the club! I have been at net zero since the beginning of August, marked on my calendar as the last in a series of Prednisolone dose reductions as "0MG"...appropriate! I can only tell you what I did, we are all different. At the two week stage, I asked for a CRP test. I know that some people don't have a raised CRP with inflammation, but I do. It was 5 which isn't rock bottom but it isn't very high either. If it had been above 7/8 I might have given the Prednisolone another few weeks. I have felt absolutely fine, the few remaining aches and pains are becoming fewer week by week. I will suddenly notice that I am able to do things that I had found difficult earlier. My policy has been to keep as active as possible to keep the flame of my metabolism burning brightly...it seems to be working for me. I suppose the difficulty for you might be getting your GP to arrange a CRP? Good luck!

borednow profile image
borednow

Well done you!!! I decided several months ago to stay at half a mg a day for an indefinite period (for ever probably as I'm 80?!). So far so good but I keep a supply of pred just in case. Hope it all goes well for you.

Alebeau profile image
Alebeau

congratulations 👍

I am hopeful to do the same but going slow this time

6 years and now at 7 mg pred and feeling not too bad for my 76 year old bones

Exercise is key for me

Leafsong66 profile image
Leafsong66

that’s lovely news for you! Thank you for sharing it! I’ts encouraging to hear. Have a great future!

Trulyscrumpious profile image
Trulyscrumpious

l’ve had PMR for nearly 8 years. l reached 5mg after about 1 year, but had been stuck there ever since. However l have had more energy recently, and also l am now prediabetic so the lower the better. l decided to have another try.

Month 1. l alternated 5 mg with 4.5. Felt ok.

Month 2. l am alternating 4.5 mg with 4mg. So far so good.

Month 3. I intend to go on 4mg

Month 4. If l still ok l will alternate 4mg with 3.5mg ……and so on.

Fingers crossed !

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