Reducing Pednisone

Posted by pmr52025 @pmr52025, Sep 16 9:59pm

I have been on 15 mgs of Prednisone since May. Recently my doctor had me reduce it to 13 mgs for 2 weeks and now 12 mgs for 2 weeks. I have started having some pain again. Pain in hands, arms and back. Is this normal when reducing prednisone? Has anyone had to go back up in mgs while trying to decrease their dosage?

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kare1 | @kare1 | Sep 29 3:33pm

In reply to @johnbishop "Hello @pmr52025, I would like to add my welcome to Connect along with @beauty44, @st1300 and..." + (show)

@johnbishop thanks for info. I just watched. Wish o had signed up so I could get on their email list, etc!!

John, Volunteer Mentor | @johnbishop | Sep 29 5:56pm

In reply to @kare1 "@johnbishop thanks for info. I just watched. Wish o had signed up so I could get..." + (show)

@kare1 if you go to their website you scroll down and there is a spot to enter your email address to sign up for their newsletter - https://creakyjoints.org/

kare1 | @kare1 | Sep 29 7:17pm

In reply to @johnbishop "@kare1 if you go to their website you scroll down and there is a spot to..." + (show)

@johnbishop

Great !! Thanks.

aflik | @aflik | Sep 30 10:17am

I started Actemra 6 mos after diagnosis and had been on as much as 40-60 mg Pred since my symptoms & diagnosis. I’m tapered off Pred now but remain on Actemra after 1.5 years. I don’t see how it’s helping my discomfort much, but my lab numbers are good now. Rheumy wants me on it longer , but no Pred !

jeff97 | @jeff97 | Sep 30 10:37am

In reply to @aflik "I started Actemra 6 mos after diagnosis and had been on as much as 40-60 mg..." + (show)

@aflik
Actemra blocks one source of inflammation, IL-6. You must have additional kinds of inflammation that are active. I started Actemra about 6 weeks after diagnosis, and I've been taking it for 14 months. I've been off of prednisone for about 6 weeks. I haven't had any symptoms of PMR or GCA since I started treatment 15 months ago.

You could try Rinvoq. It works differently than Actemra, and is approved to treat GCA.

Mike | @dadcue | Sep 30 11:53am

In reply to @aflik "I started Actemra 6 mos after diagnosis and had been on as much as 40-60 mg..." + (show)

"I don’t see how it’s helping my discomfort much, but my lab numbers are good now. Rheumy wants me on it longer , but no Pred!"
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@aflik
I still have "some discomfort." I was on higher doses of prednisone too. I spent a long time in the 40-60 mg range, Then I spent an even longer time in the 20-40 mg range. I finally got stuck on 10 mg when Actemra was started. When you consider all the flares I had tapering off prednisone --- Actemra works so much better for me.

Considering I was on Prednisone for PMR for more than 12 years, I am very happy to accept "some discomfort" in exchange for being off prednisone. More importantly, I haven't had any flares in almost 5 years since being treated with Actemra alone.

My medical records list "long term Prednisone use" as a problem. In parenthesis, long term is clarified and it says "decades." I look at it this way --- Actemra must be doing something because otherwise I would not be off prednisone.

aflik | @aflik | Sep 30 12:33pm

In reply to @jeff97 "@aflik Actemra blocks one source of inflammation, IL-6. You must have additional kinds of inflammation that..." + (show)

@jeff97 thank you!
I don’t have GCA. I know Actemra is primarily used for GCA and off label for PMR. I’ll be discussing the continued use of Actemra with my Doc during my next visit. Rinvoq seems to have some bad side effects.

jeff97 | @jeff97 | Sep 30 1:07pm

In reply to @aflik "@jeff97 thank you! I don’t have GCA. I know Actemra is primarily used for GCA and..." + (show)

@aflik
Actemra can have some bad side effects too. I take it, but my rheumatologist lists it in my chart as a major risk.

lori62yb | @lori62yb | 4 days ago

In reply to @st1300 "Don't rush reducing Prednisone. I'm taking the slow road. Reducing 1 mg per month until I..." + (show)

@st1300 morning! I was diagnosed 4 years ago with PMR, and tried Methotrexate for 9 months and it didn’t work. I’ve been successful as of the last 6 months, by doing a very slow taper. For years, I couldn’t go below 5mg, but with the help of one of the group, when I taper, I alternate my new dose with the new dose…for 10 days. Then I settle in to the lower dose. I’m now on my lowest ever at 3mg. I did begin to have clavicle and side neck pain, along with inner elbow stiffness…especially at night…but it gets better during the days. I stay on the taper for 2 months. I’m 63 and I work out 4 days a week on my Peloton bike, and do weights. It keeps me sane! Life is so much better now! My Rheumatologist said I may always have some pain, but insisted I get off the steroids. As long as it stays like this, I can accept that!

st1300 | @st1300 | 4 days ago

In reply to @lori62yb "@st1300 morning! I was diagnosed 4 years ago with PMR, and tried Methotrexate for 9 months..." + (show)

@lori62yb I may try your tapering method. I'm at 5 mg. I plan on reducing 1/2 mg every 4 weeks. But I may use your method if it flairs up. I was once off Prednisone for 3 mos, then the pain began again.