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Working with PMR

Polymyalgia Rheumatica (PMR) | Last Active: 2 days ago | Replies (10)

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@eby

I have told my friends and boss I am on steriods they really had never heard of PMR .
Does any one have a "good" experience weaning off prednisone? or all experience flare ups ?
I am down to 5mg now , feel a bit more achy than before but manageable

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Replies to "I have told my friends and boss I am on steriods they really had never heard..."

Hi @eby, Good experience tapering off of prednisone is probably not the way most of us that have done the prednisone tapering dance would describe the process. 🙃🙂... but it is one of those experiences you don't tend to forget. It's good to hear you are now down to 5 mg dose. You might find it helpful to look through the member comments and discussions on managing PMR symptoms. Here's a list from a search of Connect - https://connect.mayoclinic.org/search/discussions/?search=pmr%20managing%20symptoms.

One of the things that I think really helped me was keeping a daily log of my pain level when I first got up in the mornings along with my dose of prednisone for that day. That way it made it easier to determine if I should taper down or possibly go back up to half of my last taper down to see how I felt the next day. My feel good days in my daily log were ones that my pain level was 2 or less when I woke up. Do you keep a daily log?

Anytime you can wean yourself off Prednisone is a good experience. The process of tapering off Prednisone isn't always so good.

Given there isn't a single best way of tapering off Prednisone, it doesn't matter how it is done. It took me 12 years to get off Prednisone with an assist from Actemra. My rheumatologist said it was "remarkable" that I was able to taper off prednisone. He also said it was "amazing" but I think he was referring to Actemra.