1. < Polymyalgia Rheumatica (PMR)

Pain ever goes away on its own?

Posted by kcsfca @kcsfca, Oct 7 9:12pm

I was on Prednisone from the previous July through May this year for PMR, tapering off. I felt ok for a while, with minor pain I could live with. Over the last month, however, the intense pain has been returning to my shoulders, particularly at night. And it seems to be getting worse, not better. Does this ever get better on its own? Does the pain ever go away on its own? Or is the only solution to go back on Prednisone, which I really don’t want to do. Thank you for your thoughts and input here. I am so frustrated and depressed by this and am feeling increasingly weak and somewhat disabled by the pain.

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brooklyn1947 | @brooklyn1947 | Oct 9 12:02pm

I was diagnosed with PMR three months ago. Prednisone alone did not help me, so now I am on 10 mg of Prednisone and Methotrexate (6 pills, once a week) which has slightly helped. However, I still have pain and stiffness in the AM. The pain & stiffness diminishes as the day progresses. Any thoughts or suggestions, how to proceed? I have an appointment with my rheumatologist in 3 weeks to discuss. I also have Colitis, so I can only take Tylenol.
Any suggestions would be appreciated!

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2 replies
lindaadel | @lindaadel | Oct 10 4:27pm
In reply to @reets70 "I’m doing PT now hoping to be able to get back to an exercise routine. I..." + (show)
@reets70

I’m doing PT now hoping to be able to get back to an exercise routine. I used to walk or play golf every day, and for the past 1 1/2years, I can do nothing! Without Prednisone it’s hard to walk or even sit without pain. What’s next for me???

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I can understand what you’re saying PMR can be super frustrating!!! with joint pain your body will tell you what you can do and what you can do. what I do is try to listen to my body and only do what I can do comfortably even though it’s super Duper frustrating!!! Old routines he just not work at this time for you. but I do it’s only what I could do comfortably I do not push the envelope when possible because it’s not gonna get me anywhere but frustrated. try to take one step at a time even though I know it’s super Duper Duper Duper hard to do!!! wishing you the very best of luck going forward!!!

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lindamandrews4 | @lindamandrews4 | Oct 10 8:26pm
In reply to @lizward46 "I am sorry you are feeling so much pain. I have had a similar experience after..." + (show)
@lizward46

I am sorry you are feeling so much pain. I have had a similar experience after finally tapering off prednisone after 1 year. It was my hip joints that began to hurt, not at the same level of pain as when PMR was in full swing, but probably a 4 out of 10 on pain scale. I have had a couple of blood tests recently (which I would recommend for you) and my inflammation markers are in the normal range. So where does that leave me. I exercise which helps (walking, yoga, and weight bearing exercise). I am also taking some advil during the day when pain is especially bad. Last night I decided to take a couple of advil before bedtime and I woke up with minimal hip pain. So now maybe I will do that at night if I’m feeling a lot of joint pain. My next rheumatologist appt. is in early Nov. I hope she may have some more answers. My limited reading has told me that it can take at least 6 months for the adrenal glands to get up to speed after being suppressed by prednisone. I was sure hoping that this condition would just “poof” go away after stopping prednisone. So my long winded suggestion to you is to try over the counter pain meds, get blood work done and talk to your doctor. Good luck and hang in there. Liz W

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Did anyone have a Covid shot while tapering?

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2 replies
susan63 | @susan63 | Oct 11 7:24am
In reply to @lindamandrews4 "Did anyone have a Covid shot while tapering?" + (show)
@lindamandrews4

Did anyone have a Covid shot while tapering?

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I had my covid shot this past Monday and my flu shot last week. I am tapering and currently at 1 mg. So far so good.

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pacarolyn | @pacarolyn | Oct 11 7:59am

Hello to all,
As they say, "Been there, done that..." I can testify to all of what's been said about the pain because I had a boatload for about a year. During that year, I exercised to tolerance (PT in the gym and in the pool) and dramatically changed my diet to an anti-inflammatory diet, loss weight, took vitamins that helped with inflammation and prayed to God a lot. As a result, I saw my CRP numbers and other inflammation markers decease and pain subside gradually. I have been pain-free for several years now. Everyone is different, but I just want to let you know there is hope.

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2 replies
prestol | @prestol | Oct 11 8:18am
In reply to @brooklyn1947 "I was diagnosed with PMR three months ago. Prednisone alone did not help me, so now..." + (show)
@brooklyn1947

I was diagnosed with PMR three months ago. Prednisone alone did not help me, so now I am on 10 mg of Prednisone and Methotrexate (6 pills, once a week) which has slightly helped. However, I still have pain and stiffness in the AM. The pain & stiffness diminishes as the day progresses. Any thoughts or suggestions, how to proceed? I have an appointment with my rheumatologist in 3 weeks to discuss. I also have Colitis, so I can only take Tylenol.
Any suggestions would be appreciated!

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I was diagnosed eight months ago and prednisone alone, even at 30 mg, never completely made the pain disappear. I was started on methotrexate almost three months ago, and like you didn’t think it was helping, until suddenly the neck, shoulder, upper back pain was 75% better. I am now on eight pills weekly and finally, finally have been able to taper to 10 mg of prednisone, about to go to 9 mg. Just hang in there with the methotrexate.

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54pontiac | @54pontiac | Oct 11 3:04pm
In reply to @lindamandrews4 "Did anyone have a Covid shot while tapering?" + (show)
@lindamandrews4

Did anyone have a Covid shot while tapering?

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Yes, I had a Covid shot about a month ago. I was alternating from 2 mg to 1.5 mg. No problems.

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1 reply
nancy53 | @nancy53 | Oct 12 7:38am
In reply to @brooklyn1947 "I was diagnosed with PMR three months ago. Prednisone alone did not help me, so now..." + (show)
@brooklyn1947

I was diagnosed with PMR three months ago. Prednisone alone did not help me, so now I am on 10 mg of Prednisone and Methotrexate (6 pills, once a week) which has slightly helped. However, I still have pain and stiffness in the AM. The pain & stiffness diminishes as the day progresses. Any thoughts or suggestions, how to proceed? I have an appointment with my rheumatologist in 3 weeks to discuss. I also have Colitis, so I can only take Tylenol.
Any suggestions would be appreciated!

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Sorry about the persistent pain.

This series of exercises helped me tremendously at first. Now I'm able to do Yoga and I walk a lot. Do as much light exercise as you can, it keeps your muscles strong.

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art43 | @art43 | Oct 12 7:40am
In reply to @54pontiac "Yes, I had a Covid shot about a month ago. I was alternating from 2 mg..." + (show)
@54pontiac

Yes, I had a Covid shot about a month ago. I was alternating from 2 mg to 1.5 mg. No problems.

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Which flavor of Covid shot ? Novavax, or one of the mrna’s (Pfizer or Moderna) ? Thanks.

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