PMR or Steroid Myopathy

Posted by Pauletta @rachelp, Nov 10, 2018

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?

@carley

I am new to this sight. How do you start a new thread? I found this sight and although I do not have a confirmed diagnosis, the symptoms I am experiencing seem to match up with everyone’s post. Just started with symptoms 5 weeks ago.

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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

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@johnbishop

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

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I did but it is in a different thread

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@carley

I did but it is in a different thread

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Sorry, 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.

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@johnbishop

Sorry, 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.

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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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@carley

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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Hi @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

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@johnbishop

Hi @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

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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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@carley

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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My 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.

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@johnbishop

My 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.

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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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@rachelp

Actually, The Mayo Clinic is where I am considering seeking treatment. I have reviewed their locations, and at this time of year, their Florida Clinic has my eye.

While I like the doctors who have been treating me, it is clear that their expectation was that I would go into total remission within about 12 months. At eight months the pain began coming back, but it was always attributed by them to something other than PMR. Twelve months later, and the pain is still alive and well. Once one has suffered PMR pain, one recognizes it when it raises its ugly head again.

Thank you for the tip about Google Scholar. I will certainly be using it.

Prednisone is most definitely the magic pill for me. Within 12 hours of beginning the dosage, I was totally pain free. It was a miracle–absolutely magical. But the side effects of prednisone are horrific. My skin thinned around my eyes to the point that I have had skin tears where the nosepieces of my eyeglasses rest on my nose. I had to go to the ER with my last tear so they could glue the skin in place. I want off the Prednisone which is why I am researching Methotrexate and Tocilizumab.

My doctors have prescribed physical therapy (PT) in addition to Prednisone. My muscles were weak at the time of diagnosis because it took three months for the diagnosis to be made. After the pain was controlled, about a month of PT increased my leg strength. I have regained my leg strength, but my muscles are no better. As I told you, the PT I saw this week does not recommend PT, and she is writing a report to my rheumatologist explaining why. So . . . in a few weeks when I see the rheumatologist, I am going to ask why Methotrexate or Tocilizumab cannot be used concurrently with the Prednisone since I am still having muscle pain at low dosages of Prednisone. She has said that I was coming off Prednisone whether or not I was in pain.

It will take me a month or so to get an appointment with The Mayo Clinic, so I will continue to work with these doctors until I can get the appointment.

It really bothers me that the body language of these doctors clearly transmits disbelief in what I am telling them. It is not only their body language, it bothers me that they attribute the symptoms to osteoarthritis or steroid myopathy rather than to PMR. From their behaviors, one would think that I WANT to take Prednisone like a junkie wants his/her heroin. What I WANT to to remain mobile–neck, arms, hips, and legs.

Thank you for listening. Before I head to bed, I am checking out the link you provided.

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@rachelp – I have been treated at Mayo Clinic in Jacksonville for Breast Cancer and Giant Cell Arteritis. It is a fantastic facility and a wonderful choice especially in the winter. I was diagnosed in their Emergency Room last May with GCA. A neurologist diagnosed me so I was taken care of in the Neurology Department. You will probably be seen in Rheumatology. We live in Orlando so we stay in Jacksonville when we have appointments. If you have any questions regarding hotels, I will be happy to tell you where we stay.

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I have been diagnosed with steroid induced myopathy. I was on prednisone and a rejection drug for two years after an autoimmune disorder where my immune system played hell with my kidneys. I am off the drugs for well over a year and my kidneys are back to functioning normally now but I am left with something called steroid induced myopathy. My left leg and my left forearm have been the ones that suffer the biggest problems. I have never been advised of what to do to help myself or any type of doctor to ask for some help. I have read much on line on the subject and now feel where I am is where I’ll always be. So I was wondering if anyone else suffers the same problem. I do not suffer pain but my mobility sucks to say the least. I use walking sticks and a walker. I take aquatic exercise twice a week and try to walk out around as weather allows. Anyone can offer anymore.

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Hi @beachbum80 and welcome to Connect. You may have noticed that I moved your post to this existed discussion about steroid induced myopathy so that you could see what others have said about this topic. Simply click VIEW & REPLY in your email notification to get to your post.

I wanted to tag fellow Connect members, @rachelp and @davidgold as they have experience with Steroid Myopathy and I also wanted to introduce you to @johnbishop as he may be able to provide support for you.

Back to you @beachbum80 that's great that you are trying your best to stay active. Have you asked your general practitioner for advice on what to do?

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Hello @beachbum80 — I would like to add my welcome to Connect along with @ethanmcconkey . Thank you for sharing. I've had two occurrences of polymyalgia rheumatica (PMR) and was on prednisone for the 3 years the first time and 1-1/2 years the second time. The drug can have some devasting side effects for some people. I'm glad that you were able to get off of the drug and your kidneys are back to functioning normally. I'm sorry you were left with steroid induced myopathy. While we wait for others to respond to your post it sounds like you are doing everything you can to help with the symptoms. I did find the following article which talks a little about steroid induced myopathy and the role of exercise in treatment.

When Steroids Melt Muscle
https://www.elitecme.com/resource-center/rehabilitation-therapy/when-steroids-melt-muscle/

Have your doctors suggested any other treatments or have you thought about getting a second opinion?

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