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GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)
Polymyalgia Rheumatica (PMR) | Last Active: Feb 12 11:08am | Replies (262)Comment receiving replies
I don't want anyone to be afraid once they get to single digits. SLOW SLOW This is certainly a time when the tortoise is the winner of the race.
Entering my third year of GCA, I finally got down to single digits. I only decreased by .5 mg per month. Right now, I am holding at 3mg until I get two trips under my belt. I'm determined to see my granddaughter graduate from high school and WILL go with all the necessary apparatus.
The most important thing I can personally share is...when you reduce, don't anticipate something bad! Go slowly, and if you don't feel just right, then coast a bit longer on your present dosage. I have had no incidents at all and it is with my rheumy's blessing that I coast. Be encouraged, and as long as you have a wonderful group like this...you are never alone. 💞
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I was an underachiever when it came to tapering off quickly. It took me more than 12 years to get off prednisone so I tapered very slowly and I was very patient. I wasn't racing anyone.
My rheumatologist encouraged me to taper lower but she understood the difficulties I would encounter at lower doses. She also knew about everything I was dealing with in addition to PMR. She just encouraged me to keep trying until I was successful. She did everything she could so eventually I was successful. I have been off prednisone for the last 2 years so I'm not tapering at all now.
Things changed after Actemra was introduced to me. An endocrinologist was consulted and confirmed that I had adrenal insufficiency when I got into single digits of prednisone. The endocrinologist said I should hold my dose at 3 mg for an extended period of time. She warned me that my cortisol level was too low to taper any further. I'm glad she warned me because I would have tapered off sooner without knowing what might happen to me. My endocrinologist wasn't sure what would happen either if I tapered off too soon. That was why she put safeguards in place in case anything did happen and only said it "might be safe" to stop taking prednisone.
I didn't anticipate anything bad would happen. My endocrinologist said that I needed to be careful at that low of a prednisone dose after long term prednisone use and especially careful when I stopped prednisone so that's what I did.
I was completely surprised that Actemra worked so well and I was able to get off prednisone rather quickly after many years of trying.. My endocrinologist was encouraged that I had any adrenal function left after taking such high doses of prednisone for such a long period of time.
I would never tell anyone to taper fast. Tapering quickly wasn't an option for me after PMR was diagnosed. I have other autoimmune conditions that preceded PMR. I could taper from 60 mg to zero is less than 2 months to achieve remission of those conditions.
PMR was responsive to prednisone but it does next to nothing to allow people to achieve remission quickly. Actemra changed all that for me so I wish to share my experience. My rhuematologist doesn't know that remission is possible for me but did document that PMR seems to be in remission while I continue to take Actemra.
People should do what they think is best. I completely understand that there isn't any perfect tapering method,