PMR Taper and pain

Posted by riji @riji, Jan 5 10:29am

After 2 years with PMR, about to go to 2 mg of prednisone and feel like I did back 2 years ago...is the PMR still in me or is it the taper or both?
Thanks for any info.

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@hunib33

@riji. This process is frustrating and at times it feels as though you’re treading water. Persist. Don’t overdue activity, but do some consistent activity, even if it’s just stretching. Remember, this too shall pass—but it’s taking its sweet time! Be patient with yourself. My mantra is ‘be in good health’.

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Patience is the watchword.

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@hunib33

@raven1955. I’m into my second month of having tapered completely off prednisone. I fully expected to experience some discomfort and stiffness because prednisone had masked those symptoms for so long . I also evaluate if something I’ve lifted or if I’ve stretched too much could account for my stiffness and discomfort. I ask myself ‘is this a flare?’ If the pain does not get worse, but gradually subsides, I know it’s a part of the process of PMR symptoms leaving my body. I read on this site that symptoms could persist for a few months, but that gradually they will subside after tapering off prednisone and so far that has been my experience. I’m very gradually getting back to ‘me’ and compared to the pain and stiffness I experienced in the beginning, this is something I can endure.

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I've been taking a low dose of Prednisone for a month, and am starting to feel so much better. My PMR symptoms started 2 months ago. My PCP thinks that's what my malady is.

Since I can't see a Rheumatologist until February 6th, I plan on staying on the drug to ease my pain.

I'm questioning whether my symptoms are abating on their own, or if it's simply the help of Prednisone. Guess I'll just have to wait and see.

If this is the status quo - I can deal with it. Last month's agony, I couldn't deal with.

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@nancy53

I've been taking a low dose of Prednisone for a month, and am starting to feel so much better. My PMR symptoms started 2 months ago. My PCP thinks that's what my malady is.

Since I can't see a Rheumatologist until February 6th, I plan on staying on the drug to ease my pain.

I'm questioning whether my symptoms are abating on their own, or if it's simply the help of Prednisone. Guess I'll just have to wait and see.

If this is the status quo - I can deal with it. Last month's agony, I couldn't deal with.

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I hope you’re feeling better soon!

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@hunib33

I hope you’re feeling better soon!

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Thank you.

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Why is there a ton of pain associated with finally getting off (after 2 years) of prednisone??
I’m at 6mg of Methotrexate once a week, been at it for a month.
My rheumatologist is very vague about this question except to tell me that methotrexate takes a while to kick in.

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@johannab. There’s ’a ton of pain’ because the medication you were taking before tapering was masking the pain. There will likely be some pain/discomfort/stiffness as you taper. But gradually it will subside—this may take 6-8 weeks or more. Be patient.

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@johannab

Why is there a ton of pain associated with finally getting off (after 2 years) of prednisone??
I’m at 6mg of Methotrexate once a week, been at it for a month.
My rheumatologist is very vague about this question except to tell me that methotrexate takes a while to kick in.

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After having PMR for 3 months, was then diagnosed with RA affecting both hands. Began 8mg Methotrexate. Hand pain totally gone. Going on 11 months with PMR. Now tapering down to 2 mg Prednisone next week. Dr. says wants to get me off the Prednisone, then deal with the Methotrexate.

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I have had to bump back up on prednisone a few times and taper slower (reduction of 1/2 mg monthly). I don’t think it’s unusual-frustrating-but not unusual. I literally feel your pain. Hang in there☺️

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@raven1955

I think that evidently the dose you are currently taking isn't quite enough to control the PMR and its inflammation. You'll likely need to increase your dose up to whatever the previous prednisone dose was that was effective and kept you with minimal or no pain.

Early in 2023 I had finally reduced down to a 1 mg dose but after about 1 week the old familiar pains showed up and gradually began increasing. From all the reading on this forum and another one I realized that I had dropped below the lowest effective dose that would control the PMR pain. I had to move back up to 4 mg before the pain melted away. I sat at 4 mg for 2 months before tapering again - at an even slower rate than before. I've made it down to 1 mg dose again and will try to get to zero but after 7 years I have realized that what matters is the lowest EFFECTIVE dose - not getting to zero. We don't get any prizes for living in pain.

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Hello. And thanks for sharing the knowledge and perspective from your experience with tapering prednisone.

Next month will be one year for me with PMR. Was down to 5mg Sept.2023 when a flare up wouldn't respond to 8mg. Doc said to go up to 15mg for ten days then back to 10mg and continue weaning by 1mg/month. I'm at 8mg now for Jan. When I get to 5mg again he wants me to stay there a while. I'm concerned about gettimg to the 5mg. I'm considering staying on these lower titrating doses a month and a half to 2 months so that I'm not weaned too quickly? Don't know yet where my LED (lowest eff. dose) will be.

72 next month. Grateful for the reasonably good quality of life, considering I've had to downsize my physical exertion and create a new normal. Your recent posts have been very helpful.

Wish you the best.

Ernie

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