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What justifies an increase in prednisone?
Polymyalgia Rheumatica (PMR) | Last Active: Aug 8 6:17am | Replies (45)Comment receiving replies
@dadcue
Your experience mirrors my own. I began 15 mg of Prednisone on April 15th, prescribed by my PCP, about a week after PMR hit me hard out of nowhere. After a month I saw my rheumatologist, and after he got extensive blood work completed and my hematologist cleared me of any other issues, I was diagnosed with PMR and started to taper while receiving a monthly infusion of Actemra. I went from 15 mg to 10 mg on June 15th, then down to 7.5 mg on July 15th and down to 5 mg two weeks later. He originally wanted me to go from 10 mg to 5 mg, but I did have a tough flare 3 days after going from 15mg to 10mg, so he suggested the 7.5 mg level for two weeks, and then drop to 5 mg. He indicated that putting me on Actemra not only assists in my tapering but would help ensure I didn't migrate to GCA. I've had some minor increases in body pain during this time, but just "aches" at level 1 or 2, not the level 8 to 10 pain I was suffering during the first couple weeks of PMR.
After reading extensively on Mayo Connect and other medical papers, I did question my rheumatologist why I was tapering so quickly, as so many of the comments I read suggested tapering once a month from 10 mg to 9 mg, then 8 mg, etc. He said that was the historical recommendations, but the latest science of PMR was to taper as quickly as possible until you get to 5 mg or less. In that way you can better avoid the numerous negative side effects of prednisone, with an ultimate goal of getting off of the drug.
I now understand that everyone's journey with this debilitating disease is unique, and I am very thankful that I've been able to taper this quickly, and hope that I can get to 2.5 mg next month, and then consider stopping entirely. And hoping that my adrenal glands will be "restarting" at sufficient levels and I do not have to resume any levels of Prednisone.
I did learn and my rheumatologist confirmed that it was recommended that I take my prednisone doses with an eye towards my circadian rhythms, which for most men are strongest in the 6 AM to 10 AM time frame. When I originally started on 15 mg of prednisone I was taking 5 mg every 8 hours. But when I dropped to 10 and 7.5 mg, I took approx 2/3rds in the early morning and the other 1/3 in the early evening, minimizing the "sleeplessness" side effect. Now that I'm at 5 mg, I take 100% of that in the early morning. Seems to be working for me.
Replies to "@DadCue Your experience mirrors my own. I began 15 mg of Prednisone on April 15th, prescribed..."
I hope your reduced pain with such a quick prednisone reduction continues. It took several weeks for my flare at 6mg to gradually build from 1-2/10 up to 5-6/10 pain after reducing below my lowest effective dose, and it's only been a week or so since your last big reduction. So please let us know if your body is able to maintain the good results over time. We all have fingers crossed for you.
I would like to know what the latest science says. If the recommendations only say to taper as quickly as possible until you get to 5 mg or less it doesn't say how to do this. I think a faster taper is possible with Actemra but I'm not sure there is any "best way" to do this.
There was a recent study done but there were limitations with the study design.
https://www.medscape.com/viewarticle/998371
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When I started on Actemra 5 years ago I didn't get any instructions.. My rheumatologist started me on injections every 2 weeks. All my rheumatologist said was that I should try to taper off Prednisone. I went with the "depends how I feel method of tapering."
I was already at 10 mg so I didn't have too far to taper. However tapering from 10 mg to zero would have taken me years. I had many failed attempts during my 12 years of taking Prednisone. It took me 10 years to get to where I could stay on 10 mg of Prednisone.
The 7 mg dose of Prednisone was a huge barrier for me to overcome. I would go from 10 mg to 7 mg but always needed to go back to 10 mg.
I can only share with you how I tapered off Prednisone after Actemra was started. From 10 mg of prednisone. I tapered by 1 mg per month for the first 3 months until I reached 7 mg. I was surprised that I was on 7 mg without having more pain.
Since I felt well, I decided to put Actemra to the test. Actually, I was skeptical that Actemra would work so I decided to try a faster taper. I wanted to get the 'inevitable flare" over with. I decided to taper by 1 mg per week, I couldn't believe I was on 3 mg and still didn't have more pain.
Things got interesting when I was on 3 mg. I didn't feel well so I decided to call my primary care doctor. I didn't think it was a PMR problem. My primary care doctor was the one who ordered the a.m. cortisol level which was low. I think he told my rheumatologist who told me to stay on 3 mg of prednisone. Somehow I was referred to an endocrinologist.
I mostly stayed on 3 mg of Prednisone while I waited for my endocrinology appointment. I did some "experimenting'' with my Prednisone dose but I would rather not say what I did. I was on 3 mg most of the time for about 4 months before I was seen by the endocrinologist. She verified that my cortisol level was still low but it had improved since the first cortisol level was done.
Another cortisol level was checked 2 months later at my next endocrinology appointment. My endocrinologist said that cortisol level was "adequate" but she didn't know what would happen if I stopped Prednisone. She said 3 mg was a small dose so I could just stop Prednisone without tapering if I wished. She didn't tell me to stop Prednisone but she wanted to know what happened if I did. She gave me her direct number to call if anything happened.
I stopped prednisone and lots of things happened but I didn't have a PMR flare. Suffice it to say my Actemra injections were increased to weekly instead of every two weeks. Now I do a monthly infusion of Actemra because an infusion seems to work better than the injections. I have been completely off Prednisone for the last 3.5 years. My rheumatologist doesn't plan to stop Actemra as long as it continues to work.
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What’s your discomfort level at 5 mg?