Prednisolone stopped: This is an epic day; my first... - PMRGCAuk

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Prednisolone stopped

Sueloucam profile image
25 Replies

This is an epic day; my first day with NO PREDNISOLONE after a 5 year journey with PMR. I feel quite nervous and wonder what the next few months will be like. I have reduced extremely slowing, particularly over the last 2 years and it took me 3 attempts to get below 3mg, but once there, I seemed to manage extremely well. I am so excited! I have always been a very active person and once the PMR symptoms subsided, I slowly returned to running and going to the gym/exercising. I lost 3 stone over a year (steroid weight) and hoping to keep it off now. I would love to help others and my Rheumatology consultant was brilliant, who let me manage my steroid dosage myself depending on how I was feeling (I worked with her when she was a junior doctor in the hospital). But I still had a monthly battle with the GP surgery regarding my slow tapering, having to fight my corner on every prescription as they were telling me to reduce 1mg/month (I have them short thrift on this). But I do wonder how to people manage without support and knowledge , This site is excellent for their expertise and support, thank you.

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Sueloucam
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25 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Well done.. fingers crossed.

Pangolin43 profile image
Pangolin43

Good luck. I hope all goes well. It’s so good to hear these stories. I dream of this for me as I make slow réductions ☘️

Sueloucam profile image
Sueloucam in reply to Pangolin43

You will get there! Time and patience 😊

PMRpro profile image
PMRproAmbassador

Well done to get this far - and fingers crossed it is permanent. It is a timespan we think is more realistic - and I suspect there are many out there who are suffering having been browbeaten into compliance with silly reductions and told their aches are anything but unmanaged PMR.

Don't forget the body needs more time to recover fully and give it a chance!

SheffieldJane profile image
SheffieldJane

Inspiring news! I am imagining about a year of gently building my strength up and allowing full Adrenal recovery. Like pacing in reverse - doing a little more each week and having a programme of exercise that gradually builds. So happy for you.

Sueloucam profile image
Sueloucam

Thank you, I am already very active at the gym etc, so unless the dreaded PMR returns I think I will be OK. I will be convinced after a few months without the pred. I never thought this day would come😊😊

powerwalk profile image
powerwalk

Best of luck. Hope it goes well.

Bcol profile image
Bcol

Fab news, good luck and hope all goes well, never had a Rheumy but my docs, like your Rheumy have never pressured me with Pred timescales always left it too me. On 1mg at the moment.

Sueloucam profile image
Sueloucam in reply to Bcol

Thank you. Hopefully not long now for you either. 😊

Lonsdalelass profile image
Lonsdalelass

This is super news, so pleased for you! I remember the feeling well, of reaching zero pred, but while elated I was also filled with some trepidation for fear of PMR returning.....I've been off pred now for nearly 18 months, and I've had to tread carefully, as it were, by listening to my body and not overdoing activities. But I am getting my quality of life back, am able to up the walking more each day and feel fitter, despite some aches in my arms some days which one dose of paracetamol usually kicks into touch, so I do feel extremely lucky. Go gently and be kind to yourself.....your body has been through tough times these past 5 years. I wish you all the best and continued success! 😀

Sueloucam profile image
Sueloucam in reply to Lonsdalelass

That is good hear, well done.

Polygolfer profile image
Polygolfer

WELL DONE!

TheMoaningViolet profile image
TheMoaningViolet

Congratulations! It is an epic day. 👍

ScotWithPMR profile image
ScotWithPMR

Thanks for your post. I am at a tricky point in my tapering and your story has given me a wee bit of inspiration this morning. Good luck returning to all of your activities.

Miacaro45 profile image
Miacaro45

It is so very nice to hear good news. You worked very hard to achieve this. Congratulations

Orangecakes profile image
Orangecakes

Congratulations, wonderful to hear, it is an epic day for you and gives us all hope. Thank you for sharing your triumph. All the best👍🙂🙂🙂.

Orange_2022 profile image
Orange_2022

Great news! Thanks for sharing a positive story. This channel is so useful as you say - I'm managing my PMR through what I learn here as my GP makes no contact with me and has no idea about what I'm doing to reduce the Pred! Probably better that than being pushed to reduce 1mg per month....

Sueloucam profile image
Sueloucam in reply to Orange_2022

Well at least you can get on with it. Best of luck.

sidra1968 profile image
sidra1968

Congrats!

9lives profile image
9lives

well done and congratulations 👏 hope all goes well. Just go steady. I’m at 2mg at the moment, after 7 years on pred. I did get down to 1 mg all last year but had to increase. Your story gives me hope thanks for sharing.

Carole

Sueloucam profile image
Sueloucam in reply to 9lives

Best of luck.

Suffererc profile image
Suffererc

Well done and good luck 😊

Gossiplady profile image
Gossiplady

Hi Sueloucam! Wonderful! I am so pleased for you. An inspiration to us all. Do keep us informed how you are progressing. As you say slow slow with the low doses. Just started another taper this week on almost a dead stop at 1mg to 0.75 mg for the third time in two and a half years, so I am not anxious about it, when the dragon wants to give up, it will.

PMRGCA19 profile image
PMRGCA19

It's a fantastic result. But take it easy and learn from my mistake from doing too much too early. Please build up exercise gently and rest, rest rest . . . . . . .

Sueloucam profile image
Sueloucam in reply to PMRGCA19

Thanks, good advice.

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