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PMR or Steroid Myopathy
PMR was the diagnosis for the debilitating muscle pain I was suffering, and prednisone was prescribed. I have been taking prednisone for almost two years. At the eighth month mark (5 or 10 MGS of prednisone) I began experiencing muscle pain. With every reduction of prednisone, the pain increased. The pain perfectly mimics the pain of PMR. My doctor at first said that I was experiencing referred pain from my joints. I knew that to not be the case. Several months later, I was told that the pain is from steroid myopathy.
I am currently on 4 MGS of prednisone for one month, then 3 MGS of prednisone for one month, 2 MGS of prednisone for 1 month, and then 1/2 MG of prednisone every-other-day for one month.
From February 2018 to July 2018, I was on 2.5 MGS of prednisone. The pain did not disappear. My dosage was steadily decreased to the point that I was taking .5 mg of prednisone per day in October 2018. The pain did not relent. In fact, it worsened. The dosage of prednisone was increased to 5 MG which did not affect the pain. So . . . the reduction in dosage began again.
It is my understanding that if the pain persists after I am off prednisone, then Methotrexate will be used to control the PMR. I have no problem with that. I have never enjoyed the side effects of prednisone. It is a necessary evil if one has PMR. In fact, I prefer to not be taking any medication. But . . . I do not want to become incapacitated which was the case when PMR was initially diagnosed.
How does one discriminate between the pain of PMR and Steroid Myopathy?
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Hi Pauletta @rachelp, there is quite a bit of information available on Tocilizumab used for PMR and it does seem to have good reports. Here are a few I found.
Tocilizumab is effective against polymyalgia rheumatica: experience in 13 intractable cases
-- https://rmdopen.bmj.com/content/1/1/e000162
Tocilizumab shows promise as a new treatment for GCA, PMR
-- https://www.acrdailynewslive.org/tocilizumab-shows-promise-as-a-new-treatment-for-gca-pmr/
John
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1 ReactionI am new to this sight. How do I start a new thread. Maybe I just did. I began with symptoms 5 weeks ago. I am currently trying to get a diagnosis. Elevated sed rates and c reactive proteins; pain and stiffness in am lasting 2 to 3 hours; pain at night just trying to move in bed; pain is bilateral shoulders, hip, and buttock areas; limited shoulder ROM; mid morning pain decreases and ROM improves. I was given prednisone initially for one week. Symptoms improved, then came back. Another 20 days of prednisone initially 40mg for 5 days, then tapering down every 5 days. I did get relief initially then pain returned. Now on second round of prednisone awaiting more test results.
Hello @carley, welcome to Connect. Before starting a new discussion I would recommend going to the top of the window and clicking on Autoimmune Diseases and browsing through the current list of discussions to see if any match what you are looking for. If not then click the Start a Discussion button below the Group description. There is an excellent Get Started on Connect users guide that you can access on any Connect page by going to the bottom and clicking on the link in the first column on the left.
Another option is to click the magnifying glass at the top of the window and search Connect for a phrase or symptom you are trying to find. it will bring up a list of discussion posts that include the word or phrase you used. You can also use filters at the right of the search list to further define what you are looking for.
Are you able to share a little more about your symptoms? As patients we can't provide a diagnosis but we can share our own personal experiences through our diagnosis and treatments.
John
I did but it is in a different thread
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1 ReactionSorry, I missed your post earlier. All 3 of your posts are in this discussion we are currently viewing - PMR or Steroid Myopathy.
Sometimes it helps to go to the top of the discussion window and select Newest to Oldest for the posts to see the latest posts by members.
Any suggestions as to what I should be asking md. We took X-rays and I am waiting for radiologist to look at them. He suggested maybe to make an ortho appointment.
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1 ReactionHi @carley, your symptoms seem similar to mine when I was first diagnosed with PMR. I have no medical background or training but I would ask the doctor if they think setting up an appointment with a rheumatologist is the next step. Also, I wasn't quite sure on the dosages of prednisone. Normally when you are diagnosed with PMR and they give you prednisone they start with a dosage like 20 mg and if it makes the pain go away, you gradually taper off of the drug until you can stop taking it without pain. I would ask the doctor if tapering off too soon could possibly be part of the problem. It took me 3 years to taper off the first occurrence of PMR.
John
I do have a medical background in OT. I have not been diagnosed yet. Still waiting to rule in or out RA. After reading posts on another website I am pretty convinced I may have pmr but don’t want to rule anything else out yet. Making an appt with rheumatologist is on my mind, but in my area they are rare and long appt waits. Dosage of prednisone was to help with the inflammation initially. It appears to me that my symptoms subsided with larger dose and increased when I was taking less. I will know more when I am done with this round of 20 days. I’m sure if he suspects pmr, we will look at the dosage more closely. Just to add, it appears my symptoms started after I had flu shot. I’m not saying it caused it to flare, but I have seen other posters with similar symptoms. Any thoughts?
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1 ReactionMy only thoughts would be if it is related to the flu shot it would be pretty rare chance...but that's only a non-medical opinion. Several of my wife's sisters are RNs and they don't get flu shots because of some of the stuff (can't remember what stuff is ☺) in the shots.
My thought was it may have triggered an autoimmune response that would have manifested itself later on anyway. I’ve never had a negative response before. It was just coincidental that my symptoms appeared shortly after.
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