Anyone tapered down as directed, but increased back up on their own?

Has anyone NOT done this? I think it’s very common and I’ve certainly done it at least twice. The increase handled the returned pain and after a few weeks I resumed the slow taper.

I was diagnosed in June. I started on 20 mg to go down 1 mg each month. I also have blood test each month to check levels. I have had to adjust the medication several times. I just started 7 mg . I have pain so I am going back to 8 mg.

Hello @joycj
I had a flare up last September, 8 months into my PMR. I was down to 5mg/day. (possibly weaned too quickly?). I increased my dose to 8mg without calling my doctor. The flare kept getting worse. I called my Doc and he increased my prednisone to 15mg for ten days then back to 10mg/day and continue the weaning by 1mg /month.
I'm now back to 6mg/day for April, hoping to get back to 5mg within the next month or two. The plan is to keep me at 5mg for a while.

Something new that I'm experiencing now, 11 days into the 6mg is nasea, lightheadedness and a super-tired, weak feeling a few times a week. Mostly in the morning. Which is all very new to me. From what I've read, It's possibly related to the tapering/withdrawl symptoms? And maybe adrenal insufficiency with cortisol impairment? I'm not entirely sure. Still on a learning curve myself.
Grace and Blessings
Ernie

@joycj
Our doctor said not to take Advil for pain, only Tylenol, because of the potential for stomach bleeding (there was something else that I don't remember, but she definitely said no more Advil or anything like Advil.)

We charted and that was one of the best things we did. I made a chart for the doctor that she found very helpful and that ultimately helped figure things out.

This is not an easy road. Everyone is so different so there's no one way for people to be treated. There's the suggested treatment, and then there's reality. For us, my husband was initially diagnosed with PMR and got that pretty much under control and tapered from 30 to 12.5 mg of prednisone when he started getting new symptoms. Long story short, he developed giant cell arteritis and they had a hard time treating him because he was resistant to typical treatment. He ended up needed IV infusions of very high dose prednisone for three days to calm things down, then they put him on 80 mg daily (splitting the dose 50 mg in the AM and 30 mg in the PM) with Actemra weekly injections - this combo finally worked. We've tapered down to 60 mg and still the Actemra injections.

Good luck with this! I've added a copy of the chart I made for the doctor that helped.

My doctor had me on what I now realize is a pretty fast taper, and I’ve gone up and down twice now on my own, but with her blessing after the fact. It took 40 mg to get my initial pain under control, which I now know is an unusually high early dose (I went from 15 to 40 during the first three weeks). She recommended decreasing by 5 every two weeks, and I’ve gotten “stuck” on 20 mg. On my own I have gone up twice to 22.5, and am staying there until I see her again. But…I think I have more pain than she wants me to have, mostly in my upper arms. I dread going back to 30 or even 40! Anyone have similar high early dose? Can (should) you taper faster if you start high?

It’s a little fuzzy, but I think my dad was started at 20 mg, then he went up to 30 mg, so not as high as you, but higher than I’ve seen most people mention as an early dose.

I believe he was tapering by 5 mg roughly every two weeks, depending on regular labs and if symptoms were stable. But when we got down to 10 and definitely around the 7 mg mark, he started having more significant flares, so we had to slow the taper.

His rheumatologist said that as the dose gets smaller, you have to reduce the dose in smaller amounts because she wants to do it proportionally. For example, when he was taking 30 mg, to drop to 25 mg would be a reduction of 16% of the original dose. But to go from 15 mg to 5 would be reducing by 33%, which is much steeper and so harder to tolerate. I hope I got my math right lol.

I think for that reason, you could theoretically taper more quickly when you’re at a higher dose, but eventually you’d have to slow your roll. Anecdotally, it seems that many people here seem to start having more difficulty around the 7 mg mark, if not sooner.