How to Slowly and Safely Taper Off Prednisone but ... no set rules.

This is a better video than the first one. They first one, despite recognising there was no gold standard towards the end, still promoted rapid tapering schedules. It gave the impression that the dose of steroids was curing the PMR in a relatively short period of time, when PMR runs it's own course and the steroids just control the superficial symptoms at best.

Both videos come from a rheumatologist's perspective and are based on the medical "guidelines" for treating PMR rather than rules. I guess it is just a matter of personal preference. Successfully tapering off prednisone is difficult no matter how a person tapers their dose. My perspective is from 12 years of taking prednisone for PMR before I was able to taper off prednisone ... not exactly a fast tapering schedule.

I love how people name different taper schedules. The name I called my tapering method was "It Depends How I Feel Method of Tapering." It was very slow but not really a method that determined in advance what my daily dose would be. It was more weekly or monthly based. My goal was to stay on one dose for a period of time. My rheumatologist emphasized a "stable dose" rather than tapering. I needed more encouragement to speed up my taper rather than slow things down.

I remember when I first heard about the "Dead Slow" method. It seemed to suggest to me that I would be dead by the time I was able to taper off prednisone. I thought it should be renamed. I tried it anyway without success. I always say to do whatever works so I'm not partial to any tapering method.

I finally got off Prednisone after Actemra was started. It still took me more than a year to taper from 10 mg to zero. Actemra made a mockery of slowly tapering off Prednisone. I was tapering by 1 mg per month at first but then I went to 1 mg per week from 7 mg to 3 mg. I had to stay on 3 mg because my cortisol level was too low to go any lower. When I was finally able to taper off prednisone an endocrinologist said I didn't need to taper from 3 mg to zero as long as my cortisol level was good AND if PMR was under control. I could check both boxes so basically all I did was stop the prednisone. I stayed on 3 mg of Prednisone for more than 6 months without any taper until my adrenals started to function better.

I realize these biologics are expensive and might not work for everyone. I'm just grateful that Actemra works for me and it doesn't suppress my adrenal function. My rheumatologist says if Actemra stops working or if it causes too many side effects ... I can stop Actemra cold turkey.

Hi @plaisc, So sorry to hear this.
You need to contact your doctor immediately or go to the ER especially if you experience any visual disturbance as @art43 advised. You risk possible blindness.
If you do have GCA, your dosage of Prednisone will increase dramatically, and your doctor will probably prescribe it before any biopsy is done to confirm it.
I had PMR for a year, then GCA, off Prdenisone a year and now down to 1 mg of Prednisone after a relapse of GCA.

Thank you - that's very useful information. I would like to try Actemra and it is good to hear some success stories for it. But in Australia it's only avaiolabel for GCA or if you can establish the potential for GCA currently. Certainly at the beginning of my PMR I had symptoms that were rapidly becoming indicative of GCA but a higher dose of prednisolone eliminated that over a 6 week period. But after 18 months I am still at 15 mgs. I was at 10 mg and that was looking okay until the the CRP inflammatory markers shot up to 28.

There was an "administrative process" for me to get approved for Actemra. My doctor did the paperwork and submitted medical justification. An inability to taper off prednisone was one criteria. A failure of all other treatment options was another.

My rheumatologist first made me commit to trying Actemra IF he could get it approved. I was told that Prednisone for the rest of my life wouldn't be a good outcome. My quality of life was rather poor at that stage. I didn't think the rest of my life would be very long.

I started Actemra 6 years ago and my quality of life has improved tremendously since being off Prednisone for the last 5 years. I will be doing a TransPacific cruise to Austrailia the middle of October through mid November. I will do my monthly Actemra infusion before leaving home and I'm good for 5 to 6 weeks until my next Actemra infusion. I was confined to a chair at home when I was on Prednisone.

When I travel, my doctor writes for a supply of Prednisone that I take with me "just in case."

Hi @megz
I read in the recent past that either you or someone else while tapering down .5 mg per month was taking most of the daily dose in the morning and then taking maybe 1-2 mg of that day’s remaining dose at dinner time. Does that approach work for anyone or do you feel taking the entire dose in the morning is best? I’m currently on 7 mg/ day going to 6 mg on May 1st.
Thanks!

I was just diagnosed with PMR about 4 months ago and started 30 mg of prednisone. Took my pain all away. After about 1 month my Dr suggested reducing it, down 5 mg at a time for a month at a time. I noticed a small amount of pain started even with the first decrease but thought maybe it would go away once I got adjusted. Got down to 15 mg for a week and couldn't stand the pain so I increased back up to 20 mg for another week and the pain just kept increasing. I went up again to 25 and still had pain every day. Now, I'm back to 30mg right where I started!! So frustrating!! My pain hasn't gone away yet but it seems to be somewhat better. If I do too much one day because I'm feeling better, then I certainly pay for it the next day!!! I feel like my body is going to blow up from the swelling, weight gain etc from the prednisone!! I can't wait to get off this crap but I also don't want the pain. My Dr. says we need to be slower on the reduction, either time wise or amount wise, instead of 5 mg at a time then we might have to reduce at 2 or 2.5 mg at a time. At that rate it seems it's going to take quite a while to get off it, not really what I wanted but do we ever have a choice?

G'day @heals1225
The reason I split the dose and take 1mg of it later with dinner is to keep mornings pain-free. I can't say if it works for everyone, but many others who contribute their experiences here have also said a split dose with a smaller part of the dose later in the day helps them reduce or eliminate morning pain.

Nobody can say what's best for anyone else and everyone should be guided by what has worked (or not worked) for them in the past. I'm currently on 4.5mg and on week two of a gradual reduction to 4mg over four weeks. Occasionally I have some minor morning aches or stiffness but nothing I'd call pain.

My Week2 dosages are alternating days of 4.5mg (taken as 3.5mg morning & 1mg with dinner) and 4mg (taken as 3mg morning and 1mg with dinner). I do feel that reducing by .5mg at a time instead of 1mg is helpful too.

Welcome @notagoodfeeling, I sense a tiny bit of humor in the member name you chose and can definitely relate to PMR not being a good feeling. What helped me during the tapering process for both time my PMR was active was to keep a daily log of my level of pain when I woke up and my dose of prednisone for the day. Then when it was time to taper to the next lower dose I used my level of pain as my do I taper down or go back up a little based on my level of pain that I felt was tolerable. For me that was a 2 or less on a scale of 0 to 10. On the times my pain was higher than 2 and it was time to try to taper down, I waited a day or two to see if the pain was less and if not I bumped the dose up half of what I previously tapered down to see if it made the pain go away or if I had to go back to the previous higher dose.
Took me 3 and half years the first time around to taper off and 1 and half years the second time.

Do you keep a daily log of how you feel?

Great, thanks Meg! Appreciate your feedback.