@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