Has anyone with PMR been able to get off prednisolone?

@jfannarbor
Yes .. according to my medical records, my Prednisone use has spanned "decades." I would estimate 30 years.

I was originally diagnosed with reactive arthritis and uveitis in the early 1990s at the age of 35. My very first dose of Prednisone was for uveitis. Anywhere between 60-100 mg of Prednisone was prescribed for every flare of uveitis. It was only a guess how quickly uveitis would go into remission so my ophthalmologist prescribed huge quantities of prednisone so I would never run out.

I was very adept at tapering off Prednisone when I was treating uveitis. I could always taper off Prednisone and achieve remission again in a month or two. I always had a lot of leftover Prednisone.

I routinely medicated myself for pain caused by reactive arthritis and also trigeminal neuralgia. These conditions were diagnosed but I didn't want to bother any doctors when I could treat myself. However, both these conditions aren't normally treated with Prednisone. I was on and off Prednisone many times just because I had a lot of pain. I stopped seeing all doctors because everything they offered for treatment didn't seem to work very well.

In 2007, I decided to discard all of the Prednisone I had stockpiled. Within a week or two, I was forced to see a doctor and eventually I was diagnosed with PMR on top of everything else. I thought PMR was a "blessing" when a rheumatologist told me to take Prednisone every day for PMR.

I took Prednisone every day for 12 years for PMR. Long term Prednisone was a curse when I couldn't taper off. I had one medical problem after another including secondary adrenal insufficiency during my 12 years of daily prednisone use for PMR

When my rheumatologist decided I couldn't take Prednisone for the rest of my life -- Actemra (tocilizumab) was tried on January 1st 2019. It still wasn't easy to taper off Prednisone but sometime in 2021, I took my last dose of Prednisone.. I'm still on Actemra but I have been Prednisone free for about 5 years.

My first Prednisone dose was probably at the age of 37. My last dose of Prednisone was at the age of 67.

@gippy I was going to go into long answer but short and sweet is I agree with gippy. At 2.5 and will be off prednisone (positive not arrogant thinking) in 2 months. Will live with the minor aches etc of older age. Once you feel the pain of PMG you definitely know the differnce.

@jabrown0407 good advice. @jfannarbor I know @dadcue was off and on for over 12 years. He followed this advice. He is on Actemra not kevzara but I think they are similar.

You are on the right track. I took prednisone for PMR for about a year and I am off for about 9 months now. I think for me a key factor has been to moderate the stress in my life. For me I have learned to let go and stay in my lane largely through Alanon but there are many ways to reduce stress. Exercise and diet are strong factors as well so keep on keeping on. B

I read all your comments. I feel your pain and difficulties. My heart goes to each one of you.
Stay active as you can. Be positive and grateful. Our son has Polycythemia Vera as I have shared and he is getting sicker. Each day a Blessing. He always has a smile and such strength.
Life has so many changes we all try to do our best. Stay strong people and one foot in front of the other, baby steps sometimes. Listen to your Dr
Hugs
Donna

The short answer is yes. The rather long story is as follows: I'm a retired ER doc, age 76. I've been quite active physically most of my life, primarily with martial arts, but also with skiing, golf tennis, etc. I've accumulated a lot of joint injuries and pain, primarily shoulders and knees. About a year ago my pains began to get worse, and even my hips, ankles, and wrists variably became painful. Eventually I gave up and saw my primary MD, who did an autoimmune panel and referred me to Rheumatology. The labs were mostly normal, except for mild anemia, elevated platelets, and moderately elevated CRP. I saw a rheumatologist who said she didn't see anything rheumatologic., but after a few wks, with the help of some physician friends, I became convinced that I had PMR. Eventually I sent an email to the rheumatologist and my primarly explaining why, and she agreed to do a prednisone trial. On 20mg I felt better within hours, quite good within days. I stayed on 20mg for a month, then tapered 2 1/2mg every 2 wks until 10mg, then 1mg every 2 wks until finished. I've now been off prednisone for 2 weeks, just repeated my labs and they are normal. My knee pains never quite went away and now have come back to almost pre-PMR level, but that is probably my osteoarthritis, not PMR. I know I've had an easier time getting off prednisone than most, but hopefully it will give some of you some reassurance that it is possible.

@jabrown0407 I did a month ago fasting and in the AM and it was normal.

@provdam Thanks. I’m pleased to hear that you have been successful in tapering off completely. And also pleased you are doing so well. I saw my GP and she is happy for me to give it a go rather than stay on 1mg for ever.
Like you, and many on this site, I was quite active before PMR and so expect my sore knees are the legacy of jogging for decades.
All the very best.

@jfannarbor Thanks for the reply. So the next question would be - is the late afternoon cortisol, say 4pm, in range for time of day. If so, then you can reasonably assume that the taper should be successful if it is slow enough that your adrenal glands can adjust in time for the next reduction. With each taper the adrenal glands need to ramp up to "make up" for the steroid reduction. Patience is at play here.
I was able to taper off steroids but my inflammation would quickly return each time. After several years I finally went out-of-state to a leading teaching hospital for medical consulting. They routinely do 2nd opinion diagnostic work. They diagnosed asymptomatic GCA. I am being treated by my local Rheumy. We are now doing discovery to determine if I have aorta damage from the untreated GCA.
I wish you success on your journey. Please keep us updated.