Upping prednisone dose during a flare

If you have been on prednisone long term you could discuss an add on
biological. Consider Mediterranean diet and monitor for side effects.
Talk with your primary about cardiac risk with systemic inflammation.
Are your CRP and sed rate in line?

I've been on a Mediterranean diet since diagnosis in December of 2024. Very low sugar as well. Blood tests in late April were well within normal range. Felt great at that time.

I started at 20 mg one year ago, tapered down 1 mg every 4 weeks. Everything was fine until I went from 4 to 3, then I started flaring. I went back up to 4 then 5 now. I have pain during the night & wake up stiff. It gets better but doesn’t go away during the day. In the evening, the pain starts coming back. Nights are the worst. I take Tylenol before bed, I think it helps. I’m very frustrated. I’m tired all the time and my appetite is low.

I started at 20 mg one year ago, tapered down 1 mg every 4 weeks. Everything was fine until I went from 4 to 3, then I started flaring. I went back up to 4 then 5 now for 18 days. I have pain during the night & wake up stiff. It gets better but doesn’t go away during the day. In the evening, the pain starts coming back. Nights are the worst. I take Tylenol before bed, I think it helps. I’m very frustrated. I’m tired all the time and my appetite is low. I’m reluctant to go up to 6mg, going to stay on 5 a couple more weeks then do a blood recheck .

That's exactly where I am. I'm reluctant to go above 6mg. I do get better during the day. I'm going to stay at 6mg for a couple more weeks and hope for the best.

Sounds like you have hit the dose where your adrenals are waking up but aren't terribly effective yet, so you may have tapered too low too fast with a recent taper. You may need to reduce the taper down by even more and then sit at the lower dose for longer to give the adrenals a chance to start naturally producing cortisol. But I think there will be others on the forum who know more about this than I do personally

Completed off prednisone now and I still have trouble with pain at night that disturbs my sleeping. Pressure on shoulders and hips from lying down causes the pain but NSAIDs don’t work at all.
I’m trying turmeric (with black pepper) and it helps during the day but not overnight. Anyone else have any ideas? I also put heat on my shoulders twice a day, which really helps.
Pain goes away with activity am I am determined to keep up my regular activities!

@jmldio12
This is a path we’ll warn by many of us with PMR.
We all want off DRUGS and patience is not our virtue.
6-7 mg prednisone is a huge mtn to climb.
This blog and my experience tell me……
STAY at “the dose “ that gets you pain free for 2-3 weeks.
Don’t taper below 10% at a time and STAY at “the dose “ that gets you pain free for 2-3 weeks.
You may have to go up, in order to go down.
My Dr recommended Tylenol for Arthritis up to 6 per day. I used/use it in the morning as needed.
Lastly……the only way I was able to taper off prednisone was with the biologic Kevzara.
PMR runs a good 2 years……I’m just past 2 yrs since diagnosis and it’s a challenge. 80yo female, hike, bike, walk golfing, no other health issues.

1. Make sure that you are actually dealing with a flare of PMR and not the adrenal insufficiency that , by many accounts, can mimic the PMR pains. They did for me but patience and sitting with "some" pain at those crucial taper points (below 5 mg) helped me. The so called flares mellowed and went away on their own. Everyone is different, however. I can successfully say that I did not have the classic PMR pain when tapering. All my pain was gone during the prednisone journey and my lab numbers stayed down during that journey. Pred was working, in other words. 2. Try the biologicals (actemra and Kevzara) if you are assured it is a stubborn point in your tapering. 3. taper VERY slowly once at 5 mg. I did .5 mg every 2-3 weeks below about 3-4 mg. The last few milligrams took almost as long as the first 10. 4. Try the tylenol extra strength to weather these possible adrenal insufficiency storms. 5. Hang in there. 6. keep asking questions about whether this a flare or not. I, fortunately, never had flares but did have weird pains at lower prednisone doses which I could have mistaken for flares. Also, length of time on prednisone, age, commorbidities, and severity of PMR originally all play a role in how well one tapers. 7. Remember, tapering to 0 prednisone is possible and to live without PMR is too. I have since March 2026 after a year journey with PMR and prednisone. Not as many of us who have gotten thru PMR write into this chat room but we do exist!

@petermccarville

I think people like you should be celebrated. Most people do overcome PMR in a year or two and successfully taper off prednisone. I'm more interested in those stories because maybe I can learn more about what works. I spent "decades" on prednisone so I'm well versed on what doesn't work.

It is similar to being magical to me that people are able to taper off prednisone relatively quickly. There was nothing very magical about increasing my prednisone dose for every pain that recurred over and over again. The goal should be to make PMR go away and to get off prednisone as soon as possible. I can't say the waiting for PMR to "burn itself out" ever got me anywhere. On the other hand, I eventually had to stop adjusting my prednisone upwards and I had to wait for my adrenals to recover.

I don't think "seroid sparing medications" should be shunned in favor of more prednisone. Thanks to a biologic, I was finally able to taper off prednisone. Otherwise, I would have never been able to taper off prednisone no matter how slow my taper was. The biologic I take controls PMR without the long-term toxicity of prednisone and enabled me to taper to zero after more than 12 years of prednisone. The nice thing about the biologic -- the biologic doesn't suppress my adrenal function like prednisone did. I had to overcome adrenal insufficiency in addition to PMR and some other things because isolated cases of PMR don't tend to exist very often.
https://rheumatoidarthritis.net/clinical/beyond-steroids-pmr