Tapering off of Prednisone

I have been on 7.5mg since late January. I tapered down to 5mg from 7.5mg for one week now. I have not felt any signs of PMR except maybe a few more minutes of back stiffness in am.
Any thoughts on next dosage? Should I start now or stay with 5mg longer? I appreciate any advice…

Many people who frequent another forum would say going from 7.5 mg to 5 mg was too big of a drop already. That other forum would advise that you never decrease more than 10% at a time. Then you should stay on the same dose for an eternity before decreasing again. You should then increase your dose for any hint of PMR returning again.

The people on that other forum consider themselves experts because of how long they have taken prednisone. In my way of thinking, they are not the experts they think they are. Those people can never seem to taper off prednisone in the time that their doctor would like to see them off prednisone. They have flares doing it their way too. It doesn't seem like a successful approach to me but it might let you feel better in the long run. The people on the other forum take pride in the fact that they have been diagnosed with PMR and have taken prednisone for 10 years or longer.

I was a person who who took prednisone for PMR for more than 12 years. I never thought of myself as being an expert. I will say approximately 5 mg is the physiological dose of prednisone that replaces the cortisol that your adrenals would normally produce. All of the various ways of tapering off prednisone will not succeed if your adrenals aren't ready to pick up the slack.

Depending on many factors related to how long and how much prednisone you have taken, consulting an endocrinologist might be useful at this stage. Adrenal insufficiency symptoms may be worse than PMR.

I totally agree with you. My main problem is that my endocrinologist and rheumatologist really do not know much because they have very few PMR patients.

Yes, that is a problem ... isn't it? My doctors were quite good and very knowledgeable. However, my doctors didn't have that many answers for solving the problem with tapering off prednisone in a reasonable amount of time.

Everything came together and I manged to accomplish the feat. My rheumatologist wanted me to try a biologic that helped with PMR.

My endocrinologist let me know when it "might be safe" to taper off prednisone when my cortisol level seemed "adequate." However, my endocrinolgist wasn't certain of anything and said for me to take prednisone again for any reason if I "felt the need."

What caused you to stay on the prednisone for 12 years? What dose were you on for those years? Thanks!

@samara66 It was a combination of autoimmune related inflammatory arthritis along with PMR. There was also eye inflammation called uveitis which was associated with the type of inflammatory arthritis I had. I was genetically predisposed to the problems I was having when I was a mere 30 years old.

I was diagnosed with inflammatory arthritis with uveitis about 35 years ago. I would need 60 to 100 mg of prednisone for flares of inflammatory arthritis and/or uveitis. Those autoimmune problems were called "prednisone responsive" so I could achieve remission in a month or two. Tapering from upwards to 100 mg of prednisone back to zero was easy to do and appropriate under the circumstances.

PMR changed all that. With PMR and inflammatory arthritis it took me more than 12 years to be able to taper off prednisone from a starting dose of 40 mg. I would tell my rheumatologist that progress was slow. I was still on 30 mg of prednisone after 5 years and 20 mg after 10 years. I regretfully informed my rheumatologist that I would "never" be able to taper off prednisone but I was willing to continue taking it for the rest of my life if needed to. I was only 65 years old at the time. My rheumatologist thought I was "too young" to take prednisone for the rest of my life. He said my quality of life would continue to deteriorate if I did that.

The biologic called "Actemra" made my attempts to reduce prednisone very easy. However, when I reach 3 mg of prednisone, an endocrinologist stepped in because of problems with adrenal insufficiency. Holding my dose at 3 mg for about 6 months gave my adrenals some time to recover. The endocrinologist said it "might be okay" to go from 3 mg to zero when my cortisol level was "adequate". She didn't know what would happen if prednisone was stopped so that was when she said I could take prednisone again if I ever "felt the need."

As soon as I stopped prednisone I had a flare of uveitis. My ophthalmologist told me to take 60 mg of prednisone again. Fortunately the uveitis responded well and I could taper off prednisone again after a delay of another 6 months while Actemra was stopped. Long story, but I got stuck on 15 mg of prednisone again until Actemra was restarted. I went from 15 mg to zero in 3 months after that. My rheumatologist said it would be impossible to adequately treat everything. He allowed me to continue Actemra indefinitely or for as long as it continues to work for me.

I have now been off prednisone for 3 years. Everything seems under control even though I would still say I'm recovering from everything.

I am on 15mg prednisone for PMR (since 6/27) and wanted to go down to 12 or 11.5. I'm pretty sure my doctor wants me to drop to 10. It seems like a pretty big drop. Should I ask for a blood test if he requests this? I found a schedule:

Treatment duration and tapering of corticosteroids

Reduce dose to 12.5 mg/day for 2 – 4 weeks, then;
Reduce dose to 10 mg/day for 4 – 6 weeks, then;
Reduce dose by 1 mg every 1 – 2 months or 2.5 mg every 3 – 4 months until discontinuation (depending on symptoms)
This may be the schedule he's using and why he said it would only last 6 months. No bloodwork has been done since I was diagnosed. And no, I don't have a Rheumatologist and being in a very small town, no access to one.

@vellen, My rheumatologist gave me tapering suggestions but never told me specific amounts or times to drop to a lower dose of prednisone. Instead he had me keep a daily log of my pain level when I got up in the morning and the dose that I was taking each day. Then he said to only taper down if my pain level was acceptable to me when I got up in the morning. For me that was a 1 or 2 on a scale of 0 to 10. If my pain level was higher than 2 I would bump my dosage up half of the previous amount that I dropped on the last taper to see if the pain went down the next day. When I got to 1 mg, it took me six months of going back and forth between 1 mg and 1/2 mg before I could finally stop taking prednisone and wake up with pain less than a 2.

If you were at 12.5, and no pain how far would you drop down? I rarely have pain lately. Some back pain of I do too much but I am 68 years old and it's helped with Tylenol.

If I was at 12.5 with no pain and I had been on the dosage for a few weeks, I think I might try going down 2.5 to 10 and see what I felt like the next morning. If the pain was too much I would go up 1 mg to 11 or possibly 12 depending on how much pain I was feeling that morning.