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.

John, Volunteer Mentor | @johnbishop | Nov 4 7:40am

Hello @kaydall, I don't remember having much back pain with my two flare ups with PMR but I know you are not alone. You might want to scan through the many discussions and comments on PMR and back pain while you wait for members to respond. Here's a link that lists the discussions and comments - https://connect.mayoclinic.org/search/?search=PMR+and+back+pain.

It is a good feeling being under 5mg but I do think things always got a little harder once I reached the 5mg dosage level. Is the pain you are feeling all day or is it mainly in the morning before you take your daily prednisone dosage?

kaydall | @kaydall | Nov 4 8:16am

Definitely worse in the morning (to be expected) and then again, in late evening... Maybe from fatigue after a day's activities? Middle of the day is usually ok, but I do have to be mindful of movements.
I split dosage. 2.25am, 2.0pm, for another 2 wks, before reducing again. I've been doing ok with reducing until this point. The back pain has begun to impact my activity at this level. I was at 4.0 and increased to 4.25 to see if that helped. Moderately maybe.

bunnykfl | @bunnykfl | Nov 4 11:58am

I have the same pains but I have pain in the hips and back. I am down to 3mg of prednisone.

kaydall | @kaydall | Nov 4 12:04pm

At what level did your back pain begin? What gives you relief?

laurapmr | @laurapmr | Nov 5 9:15am

In reply to @bunnykfl "I have the same pains but I have pain in the hips and back. I am..." + (show)

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

bunnykfl | @bunnykfl | Nov 5 10:32am

In reply to @laurapmr "Ditto for me. On 3 mg. Same pains as described, worse in morning. Am living with..." + (show)

I take Tylenol 3 but my back and hips still hurt.

lizward46 | @lizward46 | Nov 5 10:38am

Hi, I am sorry for your back pain which can be so debilitating. I have been off prednisone since June, 2024 and, at first, I was not feeling much soreness/pain. But after about 3 weeks the morning hip soreness returned with occasional back pains. It was not a flare but more annoying and disquieting because I thought I was finished with PMR (haha). Fast forward and I just had an appointment with my rheumatologist. Blood work was very much in the normal range. She suggested that it my soreness is probably osteoarthritis and she ordered a hip X-rays to be sure. I feel like my body is under attack from “wack a mole”. One thing goes away and another rears it’s ugly head. I asked her why I might have osteoarthritis as I am not overweight or a crazy exerciser. I walk, do yoga, do mild strength training and play golf poorly. Her answer was not what I wanted to hear, “things just start to wear out”. She also wasn’t concerned that I take a bit of Advil daily and suggested PT. So I guess I am saying istake what meds work for you, keep moving and maybe accept that some pain/discomfort is just part of this aging process. Good luck, Liz Ward

kaydall | @kaydall | Nov 5 11:25am

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....

art43 | @art43 | Nov 5 11:34am

PMR in remission for 10 months, now down to 2 mg decreasing 0.5 per month.
Yes, to variable muscular lower back pain, occasionally max 2 out of 10, which did not exist prior to PMR.
Successfully resisting NSAID use, but have tried Tart Cherry caps (anti-oxidant) which seems to help a bit.
My thinking is that PMR has so restricted our previous levels of mobility and muscle use that they have simply deteriorated, and that a targeted PT program would be worth trying for several months.

douglwuoregonedu | @douglwuoregonedu | Nov 5 4:32pm

This is such an interesting discussion for me. I was tapering, was at 5 mg of prednisone, and had just started leflunomide, which is in a class of medications called disease-modifying antirheumatic drugs (DMARDs) to decrease inflammation and slow the progress of potential rheumatoid arthritis. I then began to experience lower left back pain. My rheumatologist said it was normal. Twenty months after getting off prednisone and leflunomide, my back pain has gone away -- at least for now. I don't understand the cause or know what to expect for the future.