Better to be in some pain or better to up the dose of prednisone?

Yes, it seems that there is a real variation in whether it eases off or not and reading some of the posts here there are many people who have had it for many years (I’m on 3 and a bit years and taking the view that it might be a long time so trying to adjust life accordingly!)

I was treated with Prednisone for 12 years before I was able to taper off Prednisone. Being able to taper off prednisone used to determine how long PMR lasted. That criteria needs to change because technically I still have PMR except I'm not being treated with Prednisone anymore. I have been on Actemra alone for the past 4 years.

You seem to know a lot about prednisone tapering and flares, so I thought I'd ask you. If I don't spot a flare and remain on my current dosage, reducing 1mg within the 4-8 weeks, will this hurt me? I ask because I am very active and often have pain. I'm a runner of 52 years, but have reduced my running to 3-4 times a week. The days I don't run, I walk. I also lift 4 days a week (lighter weights but hopefully will help prevent bone loss) and babysit a 19-month old who I pick up all day long, so I never know if the pain is overuse or PMR. I am down to 7mg and don't want to increase. I have some pain in the mornings again, but I can take a lot of pain as long as I can function. So.....thoughts?

Do you keep a daily note of your pain level? @johnbishop recommends keeping a log of daily pain levels from 1 to 10, and I have found that useful. It could show you whether the activities you do are the likely cause or if a reduction has prompted it. If the pain is not getting worse, it may not be a flare.

With my flare last year, the pain level increased very gradually over a number of weeks, starting when I reduced to 6.5mg and increasing further after I reduced to 6mg, at which time pain was 5-6/10. A blood test confirmed inflammation had risen. Do you have regular blood tests to check your inflammation levels?

Have you tried splitting your dose and taking a small amount of the daily dose with dinner? That has kept many of us painfree in the mornings. I occasionally have aches and stiffness (not even 1/10) in the morning after overdoing activity or following a reduction, but it always passes.

You're doing well to be keeping so active. As you say, it helps bones and is recommended for anyone with PMR - as much as we're able without overdoing it.

Thank you. I'm going to start tracking daily pain, beginning with last Thursday when it escalated. That's a simple but great suggestion.

I've had several blood tests with no increases, but I've never complained of increased pain until now. Also a good reminder/suggestion. I'll call tomorrow. She will do another.

I take my dosage at 10-11 pm. I have found if I take it any other time I can't fall asleep. So my mornings should still be good.

I am constantly worried that I will have to increase the prednisone. I just want off this drug. Thanks so much for your response.

I get that you want off the drug but at the likely rate of reducing by 1mg per month you will still be on it for 7 months so patience may be required. And if you do have to go up you will eventually reduce again. I found it took a week or two sometimes for a reduction become okay. all the usual inflammation reducers still can help like a swim in cold water or relaxed long gentle stretching. Patience young Jedi! It took me 12 months and I have been off for about a month and yes I feel much better now that I am off the prednisone. male 66

"Patience young Jedi! It took me 12 months and I have been off for about a month and yes I feel much better now that I am off the prednisone."
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I love this approach and congrats for getting off Prednisone. Your outcome is commendable. I must confess my patience was wearing thin after 12 years on Prednisone. I only wish the radical new approach to treating PMR that my rheumatologist wanted me to try was available sooner.

By radical new approach do you mena the Actemra? I know nothing about. I was offered Kev injections but declined, worried about bowel obstructions. How long has Actemra been on the market? Side effects?

Yes it was Actemra (tocilizumab). It isn't so new anymore and many people are on Actemra for mostly GCA.

When I started Actemra more than 6 years ago it had been recently FDA approved for GCA. I wasn't diagnosed with GCA ... only PMR among other things. My problem was that it was "impossible" for me to taper off prednisone without having a major problem. When my rheumatologist wanted me to try Actemra, it was called my "best chance" of ever getting off prednisone.

I was under the impression that Prednisone was the "only option" for PMR. Also I was being told that Prednisone for the rest of my life was an acceptable outcome. My rheumatologist disagreed with whoever was telling me those things. He said it wouldn't be easy to get Actemra approved for me. However, if I was willing to try Actemra, he would do everything he could.

Actemra was approved and it worked brilliantly for me. I was able to taper off Prednisone for the first time in 12 years. I haven't needed any Prednisone in more than 4 years. I have no side effects from Actemra.

Not only was I able to taper off Prednisone ... 5 other medications that were treating Prednisone side effects have also been discontinued. Almost all of the other medications I was taking while on Prednisone have been discontinued.

Thank you. I'm going to ask my rheumatologist about Actemra!

Additionally, you mentioned that you were diagnosed first with PMR before GCA. I'm a little worried about missing a GCA diagnosis. I've read and reread the symptoms for GCA and I don't have most of them. I do have an annoying, dull ache at my right temple. I have for a few months, which worries me. What symptoms did you experience that helped you diagnose GCA?

Thanks so much for your response.