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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Polymyalgia Rheumatica (PMR) | Last Active: 2 hours ago | Replies (2045)Comment receiving replies
@mave14 I started at 15mg, but was bumped up to 20mg then was given this plan for taper all of which required 4 weeks between tapering. 20>17.5>15>12.5>10 and 1mg per month from 10mg on down. It's a common plan seen here.
https://steroidtaperapplication.co.uk/Solution/tapers
If you haven't joined HeathUnlocked you should it's a UK website with very knowledgeable people happy to answer your questions. Mayo clinic is good but this may be even better.
https://healthunlocked.com/pmrgcauk
Copied this also
Treatment / Management
Oral glucocorticoid (GC) therapy is a well-proven treatment.[40][41] The essential points of EULAR-ACR 2015 recommendations for management are summarized as follows:
• Administer 12.5 to 25 mg daily prednisone equivalent as an initial therapy.
• Taper GCs gradually.
• Taper to an oral dose of 10 mg daily prednisone equivalent within 4 to 8 weeks.
• Once remission is achieved, taper daily oral prednisone by 1 mg every 4 weeks until discontinuation
• Treat for a minimum of 12 months.
• For relapse, increase oral prednisone to the pre-relapse dose and decrease it gradually (within 4 to 8 weeks) to the dose at which the relapse occurred
Replies to "@mave14 I started at 15mg, but was bumped up to 20mg then was given this plan..."
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@retiredphil
I used to like the UK site. There are some people with strong opinions who give medical advice and are entitled to know things nobody knows. Not much research has not been done for PMR/GCA and how to decrease our "steroid burden" as it is sometimes called. Research into PMR/GCA is only now getting the attention we all deserve.
https://www.healio.com/news/rheumatology/20250220/tsunami-of-effortbrings-biologics-to-the-forefront-in-giant-cell-arteritis-pmr
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The advice I received on the UK forum was usually to increase my prednisone dose and do a slower taper and then blame my doctor for not knowing how to taper prednisone. The truth is that nobody knows the best way to treat PMR./GCA. There are great people on the UK forum who share their experiences but struggle to taper off Prednisone the same as people here do.
I liked my rheumatolgist who was licensed to give medical advice. They checked my inflammatory markers and ordered other labs and other diagnostic tests. My doctors were honest and admitted what they didn't know. I respected them simply because they knew more than I did.
We all have a unique set of circumstances which make us all different. We can't be treated as if we all have isolated cases of PMR and/or GCA and no other problems to contend with.
I especially liked it when my rheumatologist suggested Actemra to me based on the latest research that was available in 2019. The way I tapered off Prednisone after Actemra was started didn't follow any guidelines so I relied on my doctor's suggestions. At one stage, I reduced my dose by 1 mg per week until I reached 3 mg. An endocrinologist then recommended that I stay on 3 mg for as long as needed for my cortisol level to improve. I waited 6 months without tapering for my cortisol level to be "adequate." I wasn't stuck on 3 mg forever. When an endocrinologis said it "might be safe" to discontinue prednisone I stopped prednisone cautiously. I didn't need Prednisone for the rest of my life which the UK forum said would be better than Actemra. Considering I took Prednisone for 12+ years, the thought of taking prednisone for the rest of my life didn't appeal to me. I got lucky and was able to taper off Prednisone and have now been off for more than 5 years.