Prednisone tapering: How did you do it pain free?

While decreasing the Prednisone, unfortunately, we sometimes have PMR and more. Not everybody, but some of us. I don’t know if PMR, or the trigggers that brought on PMR, are the reasons why other forms of arthritis or rheumatoid misfortunes develop in some of us with PMR.

I had osteoarthritis for a decade before PMR. Prednisone masked those symptoms for me at the higher doses. Now that I am tapering (at 6.5mg/day currently)
I feel the old arthritis symptoms returning, primarily in my hands.

I don’t know if PMR and/or its related triggers worsen arthritis, bring on RA or speeds-up one’s getting it or fibromyalgia or….the list goes on.

Maybe, some of us were just bound to get them regardless of our aquiring PMR and they become noticeable during taper.

@betsyhase I'm surprised when I see someone started on less than 15mg because that is the recommended amount. Also up to 25mg is acceptable to start with if 15mg doesn't eliminate the pain. This is for PMR and not GCA

@retiredphil
I am kind of stuck with my PCP since a Rheumatologist isn't available. So my bloodwork looks good but I still feel inflammation all over.
Caught between a rock and a hard place!!!

@betsyhase

Bloodwork is not the full story for PMR. Many of us have PMR but the bloodwork does not show it or shows it only slightly. Two other diagnostic criteria are: 1. the site of the pain--hips and shoulders in particular and 2. does the pain go away immediately with prednisone. If those two are present then it's almost certainly PMR even though your bloodwork may not show it.
Not all PCP are familiar with the condition nor its treatment.

Hi @betsyhase, You will notice that we merged your new discussion with the other discussion you started on prednisone tapering and tweaked the title a little so that other members following your progress will see your progress and new questions. Here's the link that takes you to the beginning of the discussion:
-- Prednisone tapering: How did you do it pain free?
https://connect.mayoclinic.org/discussion/prednisone-tapering-4/
Unfortunately there probably is no recommend approach that will work for everyone. You might find the following discussion helpful:
-- How to Slowly and Safely Taper Off Prednisone but ... no set rules.
https://connect.mayoclinic.org/discussion/how-to-slowly-and-safely-taper-off-prednisone-but-no-set-rules/

@kjoed53, and all... Well, my goodness! Welcome to the Prednisone tapering club. I am 79 years old and began my prednisone journey at age 40 with Sarcoid hitting my lungs. I was on varying doses of Prednisone through the years after taking a huge dose of 60 mg at first for 6 months to knock out the Sarcoid from my lungs. I went into remission with periodic flares during the years following.

I developed Vasculitis, PMR, GCA autoimmune diseases since 2 bouts of Covid in 2023, the last with IV Remvisidere and Covid pneumonia. I stayed out of the hospital by using my O2 I use nightly with my Bipap machine... I was on the Bipap with O2 for 4 days solid to keep my O2 over 90 and stay out of the hospital, agreement with the Mayo ER doc. I wasn't going into the hospital with my lung history and severe Covid! It worked and I recovered, sort of.

That's when I developed PMR, GCA and Vasculitis, not all at once but very soon after Covid improved. It did a job on my system that has kept me fighting battle and wars since. Last year in ER and hospital with 4 serious UTI infections, 3 Sepsis IV hospital bouts from UTIs, multiple infections, hospital and NH rehab stays, Coma level diabetic emergency due to Prednisone, muscle failure and paralysis for several days and now if I reduce the Prednisone below 13 mg.

While recovering from the diabetes attack, in hospital rehab, my legs were paralyzed from the waist down for 4 days. Suddenly. Possibly due to the high glucose shock to my autoimmune system. Not sure. But, was put on 20 mg Prednisone which brought back movement after several hours. It took me weeks to walk again and I am still not sure of my muscle strength that will improve only in a limited way, it seems.

I began tapering off Prednisone in October, began 20 mg in May 2025. At 15 mg, I became paralyzed again, unable to move/slide/lift my feet or legs, with severe muscle pain throughout. It was the week-end!!!!! so I increased the dosage to 18 mg on my own.

Rheumatologist began taper again, slower over several month. Again had to stop with weakening muscles, waking up almost frozen in bed, live alone... but eventually got down to 13 mg in March. I had what appeared as a stroke, not... went to ER and they had no diagnosis. did. Tapering Prednisone cause my facial muscles to pull down, weaken, on both sides, my sight was affected, my legs and entire body muscles were affected. Very weak. Unable to pick up legs.

Doc and I agreed to go back up to 14 mg where I was ok, not fine, but surviving with increased pain and weakness but able to live an isolated, semi-bedridden life. I am now still at 14 mg and doing ok. Not walking well or much, but can some and not having multiple, recurring infections as last year. I increased some supplements and refuse to get sick again and ER! I don't think I will survive another Sepsis event, so I don't plan on having one!

Now... All that is background to help you see how sensitive and vital the Prednisone taping can be. I must get the dose down, 14 or hopefully 10mg, due to infections. I must lose this added weight making it tough to move and hard on my muscles... gained 40 lbs on 20mg.
But, it must be extremely gentle reduction. Slow. Steady but slow. I take Extra-Strength Tylenol for increase pain. It actually helps. I use Kenalog cream -for Sarcoid rashes and pain - and/or Voltaran Cream, that helps some. I firmly believe therapy pool is the first therapy that works for me. I love the warm water on my entire body for relaxation, easy movement, great strengthening, and the recumbent stepper. Limited use... But, I am too weak and to immune compromised to get to the pool, do any exercises other than seated or in bed, and to be around germs.

Dropping from 25 mg to 20 mg is such a short time may be too fast. I suggest discussing seriously with your doc about a very slow taper plan, even if needed, 1/2 mg down every 2 weeks or so and see how that goes. It will take forever, yes, but it will happen without crises and flares. Tough nut to swallow, I know. It can work I believe. It is for me, so far.

I wish you well on your Prednisone journey. It's a tough route, love/hate as this medicine stopped my paralysis, Sarcoid in remission, resolves to a degree PMR, and so many other horrors. But, the damage it can cause our bodies is enormous so we must be sparing and diligently reduce our intake.

Blessings to you all... Elizabeth

@ess77
Elizabeth, you are an inspiration! Today is my third day back up to 25mg and it's not eliminating the increased pain that began on my four days of 20mg. I intend to stay at 25mg until the pain is mostly gone before I try any taper. I'm also going to discuss options other than prednisone. Things may become more clear after I see the hematologist and find out why my Free Kappa Lt Chains are markedly elevated at 143.7 mg/L (Normal: 3.3–19.4) and my Kappa/Lambda Ratio is 8.21 (Normal: 0.26–1.65). Thanks for sharing your story. My thoughts and prayers are with you!

I am 83 and it was too fast for me to drop down 1 mg per month. I started at 25 mg in December 2024. I had a flare at 7 mg and he put me back up to 9 mg. I didn't like that. Since then I am doing a .5 mg, drop, with his permission, every 2 to 3 weeks. It is much slower but now I am at 5.5 mg. This is the point where they say you can really start to feel the pain because your adrenals are starting to wake up. So slow dosage drop or not, that's what I am doing. Truly, I am getting creaky when I wake up, and it takes about 45 minutes and a very strong cup of coffee, to get going. Plus an extra strength Tylenol if I really, really need it. But I would rather weather it out with some pain than have to go back up to a higher dosage again, just to encourage myself to do the slower taper. My hair is starting to grow back and my moon face is going down, so fingers crossed. We just came back from a 12-day cruise, which also included 11-hour flights to and from Europe, and weathered it fine, thank goodness.

@elizabethannr and all... What in the world? You were on a 12-day cruise and 11 hour flights?????
My goodness... You are surely doing well. I ccan't travel at all anymore. Not even week-end jaunts to near-by places I enjoy without edema issues and icreased pain, putting me in bed for a day or two. You are remarkable.

Also, with the auto-immune issues and Prednisone, I don't dare get around groups of folks with new germs. I am extremely sensitive to infection and sepsis comes shortly often, so I live a severely isolated life, as most did during Covid. I live that life almost constantly. But, enjoy my flowers and made my upstairs into a nice, comfortable bubble. My outside connections are online, texting, zooming, videos to keep my brain active and vocabulary near... and to stay on top of world events. I learn every day from YouTube about make-up for older women, fierce women! You are one, as am I!

Oh, the .5 mg reduction helps me greatly. Slow is fine now that I adjust my attitude and accept the situation. Slow in this case is ideal... ess

Bless you and may you continue to keep moving and be the healthiest you possible!
Elizabeth

@kjoed53 and all... Thank you for your kind words. This isn't a journey for the timid or the weak. Through the years, I developed the ability to insist on questions heard, answered and a partnership with my doctors and others. No more sweet Southern lady stuff... I now have a steel backbone, slightly crooked and with a few cracks and bruises now, but steel and holding up just fine. Acceptance of the situation once it was logically and fully determined was my key to moving forward. It took a lot of quiet, deep, meditative thought and prayer to begin to accept this body and make careful, thoughtful personal decisions. I am in control. Not my wonderful doctor. nor the PA nor nor family... I am in control and work well with my supporters.

I pray you get solid answers from medical personnel you trust and admire. Then. move forward to the best for you! blessings, Elizabeth