1. < Polymyalgia Rheumatica (PMR)

Back pain

Posted by kaydall @kaydall, Nov 4 7:28am

Hello, I'm 2 years in to my PMR journey and am tapering... 0.25-0.5 reduction, every 4 weeks. Currently 4.25. Rheumy and I are thrill to be under 5.0. However, I have significant back pain that is not spine related. Lumbar muscles on both sides of spine esp when twisting, extending up into muscles under shoulder blades. (I also have neck and shoulder pain that wraps around under collarbone area but this neck/shoulder pain was the first symptom before diagnosis and has persisted throughout except with highest dosing of pred. )
Heating pad seems to help some with back pain. Tylenol or aspirin helps too but I don't like to taking tons of pain relief meds all the time. This side effect seems to increase with new tapering levels. No knee, or hip pain. The twisting pain makes exercise difficult.
Anyone have this issue and found relief / therapies outside OTC meds?

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

kaydall | @kaydall | Nov 5 7:17pm

Hooray that your back is pain free. I think there's a lot of unknowns about PMR and similar conditions. That's why I appreciate all the input from everyone on this common journey. It helps to hear other people's experiences.

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rosemargaret | @rosemargaret | Nov 6 11:44am
In reply to @kaydall "Thanks Liz. It's hopeful to hear from people who are on the backside of pred. That..." + (show)
@kaydall

Thanks Liz. It's hopeful to hear from people who are on the backside of pred. That stuff, while a life saver to get PMR under control, is also so rough on the body in so many ways! I'm glad to know the aches aren't always a flare. I guess Tylenol is my new friend for a while....

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I am down to 3 mg and hope to lower that in a couple of weeks. I still get pain and weakness about 1 hour after taking my Prednisone and need to head for my Advil. I can usually function somewhat normally a couple of hours after taking it. I have also read that this is also the "norm" for a lot of people as I originally thought it was strange.
Any similar symptoms?

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2 replies
kaydall | @kaydall | Nov 6 12:17pm

I definitely feel relief from aches after OTC meds. I usually take 1 Tylenol rapid release mid-morning and Tylenol 8hr over night and get enough relief to keep going. I have also restarted some moderate walking on the advice of my PT son and that has helped with stiffness. I will try reducing pred again with these new strategies.
Hang in there!!

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reets70 | @reets70 | Nov 7 8:56am
In reply to @rosemargaret "I am down to 3 mg and hope to lower that in a couple of weeks...." + (show)
@rosemargaret

I am down to 3 mg and hope to lower that in a couple of weeks. I still get pain and weakness about 1 hour after taking my Prednisone and need to head for my Advil. I can usually function somewhat normally a couple of hours after taking it. I have also read that this is also the "norm" for a lot of people as I originally thought it was strange.
Any similar symptoms?

Jump to this post

My prednisone dose is beginning to taper from 20 mg down to 12 1/2. I tapered down a year ago, but I have relapsed since a Covid case that hospitalized me in January. I have severe back pain that does not respond to anything but nsaids which I cannot take. I’m hoping that the prednisone will kick in soon as it did last year. Back pain can be debilitating to anyone who is suffering with it as it affects everything you do on a daily basis.

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graycie17 | @graycie17 | Nov 16 5:25pm
In reply to @laurapmr "Ditto for me. On 3 mg. Same pains as described, worse in morning. Am living with..." + (show)
@laurapmr

Ditto for me. On 3 mg. Same pains as described, worse in morning. Am living with it oK with tylenol

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I take Tylenol arthritis it works pretty good for the pain. Stronger than regular Tylenol.

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kaydall | @kaydall | Nov 16 5:32pm

How often and how much daily?

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art43 | @art43 | Nov 17 12:13pm
In reply to @rosemargaret "I am down to 3 mg and hope to lower that in a couple of weeks...." + (show)
@rosemargaret

I am down to 3 mg and hope to lower that in a couple of weeks. I still get pain and weakness about 1 hour after taking my Prednisone and need to head for my Advil. I can usually function somewhat normally a couple of hours after taking it. I have also read that this is also the "norm" for a lot of people as I originally thought it was strange.
Any similar symptoms?

Jump to this post

Hopefully you are aware that prednisone and NSAID’s are not to be taken together without specific doc approval, and typically only with a concurrent antacid.
Please ask your doc, and/or google this interaction. It can be extremely dangerous by causing stomach or intestinal perforation.

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ciutadella47 | @ciutadella47 | Nov 17 12:38pm

I'm 2 yrs into this journey. Prednisone intake up and down. Dr put me on Kevsara to help with pain...problem walking, back and hip pain, no sleep. Kevsara lasted 4+ months with all symptoms worsening, I had gotten down to 6 mg of Pred gradually progressing from 10 mg and changing every 3-4 weeks. Now I'm back to 10 mg of Pred and adding Azathioprine 50 mg twice a day. Pain has persisted since the change 3 days ago. I'm deeply frustrated and depressed.

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kaydall | @kaydall | Nov 17 12:45pm

It is a frustrating journey with this thing. The pain always seems to be grinding in the background somewhere. Hang in there and don't give up. (Hugs)

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