Hello again my lovely fellow PMR sufferers. Thoug... - PMRGCAuk

PMRGCAuk

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Hello again my lovely fellow PMR sufferers. Thought I would post an update to my stopping Pred 3 weeks ago......

Lollysimp1 profile image
14 Replies

After stopping Pred from 1mg almost a month ago I can honestly say I'm now feeling fine. I caught a cold/flu which was a pretty nasty one and one which hung around for a while, but now I'm feeling good. My adrenals must be stepping up as I have fought the cold off without going back on the steroids. I never thought I would ever be able to say I am Pred free and feeling ood:-) Here's hoping it really has Burnt itself out. X

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Lollysimp1
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14 Replies
soojay profile image
soojay

Well done brave one!!!Hugs.Soo

shania profile image
shania

Lollysimp1, so happy to hear of your continuing progress. I hope I might follow suit. Well done. x

Loco99 profile image
Loco99

I'm very pleased to read this, well done and all of the best.

pjsmum profile image
pjsmum

Well done! This was so heartening to read, to know there IS light at the end of the tunnel. I was diagnosed with PMR in November 2012. I started at 20mg, gradually reducing down. Around June last year, my GP (I have always been GP managed) suggested reducing by 1mg a month. All has been well, with no return of pain (only ever experienced pain in shoulders and arms). However, 12th December I was down to 1mg. I noticed a gradual return of pain/stiffness (very bizarrely, only my right arm though). Come 12th January, instead of stopping completely, I was taking 1mg every other day. But today, the pain in my right shoulder/arm is quite bad, so I had a telephonic consultation with my GP who has suggested I revert to 1mg a day for the next 3 months and see how I go, saying if it's no better in a month's time to speak to him. In between diagnosis and the present day, my original diagnosing GP retired in September last year. The GP who has taken over believes in a much slower and longer reduction in dosage - saying PMR is such a difficult thing to diagnose/treat and every medic is different in their approach. So here I go - instead of coming off completely, I am starting on the Prednisolone path again. Maybe one day, I will be able to stop completely.

cynbil profile image
cynbil

Hi Lollysimp Many congratulations on managing to come off the prednisalone, I sincerely hope you remain pain free and well. I hope that one day I will be able to say the same. I am currently on 11mg of pred, after recently have a bad flair, however I remain optimistic. Take dare Cynthia ( cynbil) x

yevrah profile image
yevrah

from one person who at this moment in time seems to be going backwards and not forwards (waiting from call from doctor as i type) thank you for sharing your really really goods news it is so nice to hear good news. i hope that you are now totally clear from this painfull illness and wish you well for your future. thankyou

Annodomini profile image
Annodomini

Well done, Lollysimp. I was hoping to have abandoned preds by now, but a rise in my CRP and some very bad pain in my shoulders, thighs and upper arms sent me back to a GP who suggested going back to 5mg. Only two days ago, but I think I can already feel an improvement. Perhaps by the summer I shall join you in being pred-free. Good luck with the rest of your life!

55grove profile image
55grove

Well done. It is good to hear your news and encouraging. Going down gradually and perhaps by August I may see the end of Preds. Very best regards....

Well done it's good to hear you have beaten the PMR and steroids hope you continue to improve and feel good,

I started on 60mg a year ago now reduced to 9mg, but had to stop reducing for awhile as I have developed a DVT the thought of one day being steriod free keeps me going,

Take care try not to overdo things to quick,

shania profile image
shania

Well done Lollysimp 1

NanaB43 profile image
NanaB43

Wonderful I am down to 2mg you have given me hope for being predisiolone free after being on it for six years

Lollysimp1 profile image
Lollysimp1

He everyone I'm really sorry that I haven't replied sooner, I've been away for a few days. Thank you so so much for all of your kind words and encouragement! I am really glad to be able to share my experience and that it gives people hope and shows that a Pred free life be achieved even after what seemed like a mountain of setbacks. :-) x

Whittlesey profile image
Whittlesey

Hi Lollysimp1, congratulations ! So good and hopeful to hear. I hope you stay symptom free and life is good. all my best, Whittlesey

Lollysimp1 profile image
Lollysimp1

Dear Whittlesey, thank you so much for your kind words. I'm going bowling with my grandchildren tomorrow :-) x

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