1. < Polymyalgia Rheumatica (PMR)

Saying Goodbye and Thank You ALL

Posted by ninadavis @ninadavis, 4 days ago

It's been a week since I stopped taking my last daily dose of 1/4 mg of prednisone, tapering from 20 mg for the last 18 months, VERY slowly. I have an appt. with my rheumatologist in two weeks and will get blood done of course. So I am here to say goodbye and I hope I never 'see' any of you again, lol. I have learned a tremendous amount and you all have helped me feel as if I was not alone. Thank you all ever so much and good luck to all of you.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Mentor
John, Volunteer Mentor | @johnbishop | 2 days ago
In reply to @dbloom "Congratulations! I only recently found out the PMR support group and have found the members comments..." + (show)
@dbloom

Congratulations! I only recently found out the PMR support group and have found the members comments and experiences very helpfull. I have had PMR for 10 & 1/2 months and have tapered down from 20mg to 10mg. Tried a couple times to go down to 9mg but had go back to 10mg. I was wondering if you or other members have any personal experience/advice on diet and exercise. I have read some articles about the benefits of a good diet (less sugar, alcohol etc) and also the need for some exercise. I am curious about how exercise and diet along with your tapering schedule have contributed to your success in beating your PMR.
Best of luck in the future.

Jump to this post

Both exercise and diet helped my second time around with PMR. The first time it took me 3 and 1/2 years to taper off and then it came back six years later. The second time I made some lifestyle changes to not gain the extra weight from prednisone so tried to eliminate sugar as much as possible and eat a healthier diet with less inflammatory foods. I was able to taper off of prednisone in 1 and 1/2 years the second time and so far the PMR is still in remission going on 7 years. I believe it has helped others also. Here's a search of Connect with links to the discussions and comments from others:

-- "PMR exercise": https://connect.mayoclinic.org/search/?search=pmr+exercise
-- "PMR diet": https://connect.mayoclinic.org/search/?search=pmr+diet

REPLY
dbloom | @dbloom | 2 days ago

Thanks for your response and links. Based on my short time as a PMR patient and members shared experience, it seems that tapering alone may not be enough to beat PMR.

REPLY
1 reply
lindaadele | @lindaadele | 1 day ago

Thank you very much for all of your informative posts!!! my very best wishes to you going forward!!!

REPLY
megz | @megz | 1 day ago
In reply to @dbloom "Thanks for your response and links. Based on my short time as a PMR patient and..." + (show)
@dbloom

Thanks for your response and links. Based on my short time as a PMR patient and members shared experience, it seems that tapering alone may not be enough to beat PMR.

Jump to this post

Prednisone does not cure PMR. It just keeps pain and inflammation at bay while our bodies try to overcome PMR. Any healthy lifestyle changes and dietary improvements we make can only help. Cutting way down on carbohydrates/sugar, ditching processed foods and additives and keeping moving through the day are all good.

REPLY
Howdy! | @kereno | 1 day ago
In reply to @dbloom "Congratulations! I only recently found out the PMR support group and have found the members comments..." + (show)
@dbloom

Congratulations! I only recently found out the PMR support group and have found the members comments and experiences very helpfull. I have had PMR for 10 & 1/2 months and have tapered down from 20mg to 10mg. Tried a couple times to go down to 9mg but had go back to 10mg. I was wondering if you or other members have any personal experience/advice on diet and exercise. I have read some articles about the benefits of a good diet (less sugar, alcohol etc) and also the need for some exercise. I am curious about how exercise and diet along with your tapering schedule have contributed to your success in beating your PMR.
Best of luck in the future.

Jump to this post

I take the advice of a naturopathic MD as well as my PCP (haven't found a rheumatologist here yet). My PMR was in remission 9 years and then I pushed myself over the edge through overwork and overstress. Rude awakening! I am tapering off prednisone (from 20 to 15 to 10 then it will be 5mg). I hope to taper off more quickly this time (last time I took it a good 1-1/2 years). My naturopath took me off vitamin D, turmeric-cucumin (which counter prednisone) and has prescribed PEA Discomfort Relief (Life Extension) to try for discomfort and/or SPM Active (Metagenics) as needed if pain is too much. She also had me stop ibuprofen and acetaminophen--though I take the latter for arthritis on a bad day. Most importantly she put me on a strict anti-inflammatory diet with physical therapy. I find water walking the most beneficial exercise--but it wipes me out for the duration of the day. Rest is a reset but I am looking forward to having energy again someday and getting back to my garden.

REPLY
dbloom | @dbloom | 17 hours ago

Thank you for sharing your experience and insight. I will try and improve my diet and exercise more. I hope you can enjoy your gardening later.

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