Flare onset: Is this truly a flare?

Posted by pdxmac @pdxmac, Jul 24 10:15am

I was diagnosed with PMR in Sept 2023, and have been managing symptoms with Prednisone, NSAIDs as needed for pain management, and careful lifestyle choices (no sugar, gentle movement, emphasis on sleep and stress reduction). I found early on that I could not reduce the Preds at the fast clip recommended by my rheumy. I started at 20 and she wanted me to drop to 15 pretty quickly. Over time I've worked with a new rheumy and she has me dropping at 0.5 mg every two weeks. Things were going well until I got to 10.5 mg. The first week went well but in the second week (around day 10) I started experiencing what I suspect is a flare. I say it that way because as flare it is fairly mild. I can still sleep well but the mornings are pretty awful and I've had to really increase the NSAIDs. I did not reduce to 10 mg on the "schedule" and have been trying to get in touch with her to see if I should go back up or stay where I am. My question for you, oh wise and experienced ones, is this: is this truly a flare (I can't imagine why it came on during the second week and is not what I thought would be much more debilitating) and if it is, what advice you may have for me? I know from this forum that the real challenge will be when I get below 10. BTW, I have several lifetime milestone events at the beginning of September (son's wedding and our own 40th anniversary), so I'm trying to be as proactive as I can to be in good shape then!

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@pdxmac, you might find some helpful suggestions in this related discussion:
- PMR Flare up: Any suggestions on what to do? https://connect.mayoclinic.org/discussion/flare-up/

Tapering off medications like prednisone can be challenging. The fact that it happened in the second week of your latest taper is not a reason to rule it out as a flare (says this non-doctor). I'm glad that it is mild and that you can sleep. As you know, this is one race where being the tortoise is better than being the hare. And you focus is one the important events in September.

Can you consult with your rheumatologist about staying on the current dose for longer to allow more time to adjust?

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NSAIDS (non steroidal anti-inflammatory drugs) aren't supposed to be taken with prednisone because of the increased risk of damage to the stomach or colon lining. You don't want gastrointestinal problems on top of everything else. Tylenol or similar are the recommended painkillers to take with prednisone, rather than NSAIDS.

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Thank you both. Your responses reinforce my inclination to trust myself instead of my new rheumatologist. I was able to email her and she wants me to decrease the preds but take Meloxicam with dinner every night. She says Tylenol is not anti-inflammatory and will not help me. Even the pharmacist recommended against taking Meloxicam with Prednisone. I think I'll trust my gut and stay at the 10.5 dosage another week or so. A couple of hours of aches in the morning seem like a worthwhile trade for avoiding GI issues.

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Has anyone else used Meloxicam long term while tapering off of Prednisone? I tried it per rheumatologist's orders for two days and it did help in a way that Tylenol does not. But I don't like what I'm reading about drug interactions btwn Meloxicam and preds.

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@pdxmac

Thank you both. Your responses reinforce my inclination to trust myself instead of my new rheumatologist. I was able to email her and she wants me to decrease the preds but take Meloxicam with dinner every night. She says Tylenol is not anti-inflammatory and will not help me. Even the pharmacist recommended against taking Meloxicam with Prednisone. I think I'll trust my gut and stay at the 10.5 dosage another week or so. A couple of hours of aches in the morning seem like a worthwhile trade for avoiding GI issues.

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I don't know all your circumstances or why your rheumatologist is pushing the reductions hard, but I wonder why she thinks the new pain is inflammation rather than steroid withdrawal pain from reducing too quickly, or the usual low grade pain that many of us have for a week or more after each reduction. I occasionally take the Tylenol equivalent in Australia (OsteoPanadol, 600mg slow release) to knock back reduction aches, not to reduce inflammation - that's the job of prednisone.

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@pdxmac

Thank you both. Your responses reinforce my inclination to trust myself instead of my new rheumatologist. I was able to email her and she wants me to decrease the preds but take Meloxicam with dinner every night. She says Tylenol is not anti-inflammatory and will not help me. Even the pharmacist recommended against taking Meloxicam with Prednisone. I think I'll trust my gut and stay at the 10.5 dosage another week or so. A couple of hours of aches in the morning seem like a worthwhile trade for avoiding GI issues.

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I have been on Meloxacam for the past month and nothing else. So far, so good.
I am able to make a fist with both hands and no need for Tylenol or Volteran. Off prednisone entirely since January and not going back.

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@pdxmac

Has anyone else used Meloxicam long term while tapering off of Prednisone? I tried it per rheumatologist's orders for two days and it did help in a way that Tylenol does not. But I don't like what I'm reading about drug interactions btwn Meloxicam and preds.

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I was put on Meloxicam maybe about ten years ago for a severe flare of my inflammatory arthritis—I could not walk the pain was so bad in my hips , feet and legs. I don’t remember exactly how long I was on it- maybe about 4 months? It was a miracle drug for me! No bad side effects. I do remember having morning pain and using ice packs on my swollen ankles for maybe the first week or so. She did put me on a gastric protective, Carafate, because I’m sensitive to NSAIDS. I took a low dose for a short time and it worked good for me! I did have a short term use of low dose prednisone with a quick taper while on this drug.

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I always take prednisone and NSAIDS with food.
I add generic famotidine chewables at lunch and bedtime. There is the risk of side effects for all effective
medications. With chronic inflammation make certain
your physicians have screened for cardiovascular risk
factors and take measures to mitigate them.

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I was diagnosed with PMR 16 months ago and started at 20mg/day. tapering every month BUT if the tapering discomfort was too much, I went back to the last dosage that worked and stayed on it for an additional 2-4 weeks before trying to taper again. My doctor has me taking a CRP/blood test every month and up until a few weeks ago, my CRP was normal. Then: FLARE. it felt like I was back to the original pain of PMR and not adjustment aches. My CRP confirmed it--it was 48 (should be under 5). I had tapered to 2 mg/day but it took 5 mg/day to control the flare.
BUT from 5 mg/day I tapered fast every week and am now back to 3 mg/day and comfortable.
You should ask you doctor to authorize blood tests to confirm your inflamation is normal or a flare requiring a significant (temporary) increase of pred. I have never tapered my pred unless I felt quite comfortable at the dosage before I tapered. Yes I have had tapering discomfort but if it lasts more than 5 days I think I have tapered too fast and go back for a few weeks before trying again.
I am NOT sure of the definition of "flare" but I know I had one.

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Thank you! Very helpful info

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