1. < Polymyalgia Rheumatica (PMR)

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?

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

tinkerbell | @tinkerbell | Nov 14, 2018
In reply to @rachelp "Actually, The Mayo Clinic is where I am considering seeking treatment. I have reviewed their locations,..." + (show)
@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.

Jump to this post

@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.

REPLY
beachbum80 | @beachbum80 | Apr 21, 2019

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.

REPLY
Ethan McConkey, Moderator | @ethanmcconkey | Apr 21, 2019

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?

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Apr 21, 2019

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?

REPLY
1 reply
beachbum80 | @beachbum80 | Apr 22, 2019
In reply to @johnbishop "Hello @beachbum80 -- I would like to add my welcome to Connect along with @ethanmcconkey ...." + (show)
@johnbishop

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?

Jump to this post

Hello John and thank you for your quick response. After reading the article you forwarded I now realize there maybe an answer to my shortness of breath,in that, my respiratory muscles may be affected by the myopathy. When the doctor sounds my chest it is always clear as a bell and my o/2 stats are are always excellent. I do pool exercise for an hour two to three times a week and hope this will help to keep me going. Your article also mentioned how resistant exercises may benefit myopathy. I will certainly give it a try! Once more thank you very much.

REPLY
chochosana | @chochosana | Feb 1, 2023
In reply to @rachelp "Actually, The Mayo Clinic is where I am considering seeking treatment. I have reviewed their locations,..." + (show)
@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.

Jump to this post

Be careful what you wish for! I do not have PMR, but have psoriatic arthritis and osteoarthritis, pretty severe according to x-rays. Knees are completely fused. I have been on IV therapy for auto immune disorders for 10 years and on prednisone for at least that long - different doses from 5 mg to 60mg depending on what’s wrong with me at the time. in the last five years the doctors have tried to wean me off - every time I got down to 5 mg I was in agony and in a walker or a wheelchair. The 10 mg kept me walking and traveling around the whole United States in a motorhome that I drove until suddenly this year in January I had trouble walking. I was in and out of four hospitals before I finally got MRIs taken and found out that the tendons in my legs are completely torn away from the bones, including the large hamstrings. I am now stuck with a walker and could be in a wheelchair within months and the doctors want me to go to a care facility and say I am unable to live independently. This is a known side effect of prednisone and is insidious until it is too late . So if you can try something else and if it works even halfway to what you expected the prednisone to do - go for it because otherwise, you may end up in a nursing home like I will.

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Feb 2, 2023
In reply to @chochosana "Be careful what you wish for! I do not have PMR, but have psoriatic arthritis and..." + (show)
@chochosana

Be careful what you wish for! I do not have PMR, but have psoriatic arthritis and osteoarthritis, pretty severe according to x-rays. Knees are completely fused. I have been on IV therapy for auto immune disorders for 10 years and on prednisone for at least that long - different doses from 5 mg to 60mg depending on what’s wrong with me at the time. in the last five years the doctors have tried to wean me off - every time I got down to 5 mg I was in agony and in a walker or a wheelchair. The 10 mg kept me walking and traveling around the whole United States in a motorhome that I drove until suddenly this year in January I had trouble walking. I was in and out of four hospitals before I finally got MRIs taken and found out that the tendons in my legs are completely torn away from the bones, including the large hamstrings. I am now stuck with a walker and could be in a wheelchair within months and the doctors want me to go to a care facility and say I am unable to live independently. This is a known side effect of prednisone and is insidious until it is too late . So if you can try something else and if it works even halfway to what you expected the prednisone to do - go for it because otherwise, you may end up in a nursing home like I will.

Jump to this post

Hello @chochosana, Welcome to Connect. Thank you for sharing your story on long term prednisone use. I'm not sure @rachelp will see your reply since she last posted in 2020. I'm sorry to hear you are now stuck with a walker and the potential of being in a wheelchair soon. My mother struggled with rheumatoid arthritis along with other conditions which left her in a similar situation but she was able to stay with my sister. It is a difficult situation to say the least and being your own advocate by learning more about treatments and options are what is needed.

Do you have any family close that can help you live independently?

REPLY
1 reply
DadCue | @dadcue | Feb 2, 2023
In reply to @chochosana "Be careful what you wish for! I do not have PMR, but have psoriatic arthritis and..." + (show)
@chochosana

Be careful what you wish for! I do not have PMR, but have psoriatic arthritis and osteoarthritis, pretty severe according to x-rays. Knees are completely fused. I have been on IV therapy for auto immune disorders for 10 years and on prednisone for at least that long - different doses from 5 mg to 60mg depending on what’s wrong with me at the time. in the last five years the doctors have tried to wean me off - every time I got down to 5 mg I was in agony and in a walker or a wheelchair. The 10 mg kept me walking and traveling around the whole United States in a motorhome that I drove until suddenly this year in January I had trouble walking. I was in and out of four hospitals before I finally got MRIs taken and found out that the tendons in my legs are completely torn away from the bones, including the large hamstrings. I am now stuck with a walker and could be in a wheelchair within months and the doctors want me to go to a care facility and say I am unable to live independently. This is a known side effect of prednisone and is insidious until it is too late . So if you can try something else and if it works even halfway to what you expected the prednisone to do - go for it because otherwise, you may end up in a nursing home like I will.

Jump to this post

Hi @chochosana I would just like to say that I can understand how you feel. I rated my health as excellent when I was diagnosed with reactive arthritis with uveitis at the age of 32. My first dose of prednisone worked its magic back then.

I was told that I was positive for HLA-B27 which wasn't such a big deal when I was tested. It was just a random bit of genetic information that didn't mean too much at the time.

https://www.mountsinai.org/health-library/tests/hla-b27-antigen

I'm now 68 years old and massive amounts of prednisone kept me going for about 35 years. Unfortunately, my medical problem list kept getting longer and longer during my years of taking prednisone. Premature cataract formation at the age of 35 was just a prelude for more things to come.

I might have done things differently knowing what I know now about prednisone. The pain was unrelenting sometimes and I didn't even know why things hurt so much. I don't know what was worse --- the autoimmune disease or the medication used to make the pain bearable.

I'm currently taking a biologic medication that my rheumatologist wanted me to try four years ago. It worked well for me and about a year later, I was off prednisone. My rheumatologist thinks I'm "better off" being on the biologic treatment as opposed to lifelong treatment with prednisone. I would agree with my rheumatologist's assessment because things appear to be heading in a better direction.

There has been a lot of damage done in the wake of this whole ordeal. I honestly don't know if the damage was caused by the autoimmune disease or the medication used to treat it. I tend to believe it was a combination of both.

REPLY
chochosana | @chochosana | Feb 2, 2023
In reply to @johnbishop "Hello @chochosana, Welcome to Connect. Thank you for sharing your story on long term prednisone use...." + (show)
@johnbishop

Hello @chochosana, Welcome to Connect. Thank you for sharing your story on long term prednisone use. I'm not sure @rachelp will see your reply since she last posted in 2020. I'm sorry to hear you are now stuck with a walker and the potential of being in a wheelchair soon. My mother struggled with rheumatoid arthritis along with other conditions which left her in a similar situation but she was able to stay with my sister. It is a difficult situation to say the least and being your own advocate by learning more about treatments and options are what is needed.

Do you have any family close that can help you live independently?

Jump to this post

Thank you John for your reply. I do have some assistance but I’m going to move next to them and get home health and try and stay somewhat independent. I’ll have a ramp built and I hopefully be able to stay on my own for a while longer. I was an RN for 20 years and so I do my research and will get into physical therapy once I get settled. I had to move a few hundred miles away and then go from hotel to apartment etc. until I can get my place fixed and change medical insurance and all my doctors etc. so there’s been a couple of months where I had to move around and my daughters been a big hel. if anybody has suggestions as to what I should do besides physical therapy that would be a big help. I have to see an endocrinologist as my adrenal gland, has shut down, so that’s going to be a few years of tapering off my prednisone , I’m still on 5 mg daily. O I will probably continue deteriorating at the same rate. I just found this website and I didn’t even know how to use it, so thank you for your suggestion about timeline.

REPLY
copeterson | @copeterson | Feb 2, 2023

My doctor is telling me 7.5 mg is so small of a dose not to be concerned. Thoughts??

REPLY
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