Prednisolone stopped

[Sueloucam]

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.

[DorsetLady PMRGCAuk volunteer]

Well done.. fingers crossed.

[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 in reply to Pangolin43]

You will get there! Time and patience 😊

[PMRpro Ambassador]

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]

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]

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]

Best of luck. Hope it goes well.

[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 in reply to Bcol]

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

[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 in reply to Lonsdalelass]

That is good hear, well done.

[Polygolfer]

WELL DONE!

[TheMoaningViolet]

Congratulations! It is an epic day. 👍

[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]

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

[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]

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 in reply to Orange_2022]

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

[sidra1968]

Congrats!

[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 in reply to 9lives]

Best of luck.

[Suffererc]

Well done and good luck 😊

[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]

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 in reply to PMRGCA19]

Thanks, good advice.