Share this:
Pauletta
@rachelp

Posts: 5
Joined: Oct 27, 2018

PMR or Steroid Myopathy

Posted by @rachelp, Sat, Nov 10 2:51pm

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?

REPLY

Hello @rachelp, welcome to Connect. I have had 2 occurrences of PMR. The first lasted 3 years at which time I was able to taper off of prednisone. Then it went into remission for 6 years and the 2nd occurrence lasted a year and half and I was able to taper off prednisone this past February. Methotrexate was never offered as a treatment for me by my rheumatologist but I certainly would have tried it the first time around as I really had a problem tapering off. Sometimes just a 1 mg drop and the pain would come back in my shoulders, arms, legs and hands with a vengence. I have no medical training or background but my guess is that pain is pain and I think it would be difficult to discriminate between the two. I did find a short article that talks about it being misunderstood (I think).

Acute steroid myopathy: a highly overlooked entity
https://academic.oup.com/qjmed/article-abstract/111/5/307/4862462

I did find one member who has a profile mentioning he was diagnosed with steroid induced myopathy. @davidgold are you able to share any suggestions or information for @rachelp?

John

@johnbishop

Hello @rachelp, welcome to Connect. I have had 2 occurrences of PMR. The first lasted 3 years at which time I was able to taper off of prednisone. Then it went into remission for 6 years and the 2nd occurrence lasted a year and half and I was able to taper off prednisone this past February. Methotrexate was never offered as a treatment for me by my rheumatologist but I certainly would have tried it the first time around as I really had a problem tapering off. Sometimes just a 1 mg drop and the pain would come back in my shoulders, arms, legs and hands with a vengence. I have no medical training or background but my guess is that pain is pain and I think it would be difficult to discriminate between the two. I did find a short article that talks about it being misunderstood (I think).

Acute steroid myopathy: a highly overlooked entity
https://academic.oup.com/qjmed/article-abstract/111/5/307/4862462

I did find one member who has a profile mentioning he was diagnosed with steroid induced myopathy. @davidgold are you able to share any suggestions or information for @rachelp?

John

Jump to this post

I saw a physical therapist today. After a strength assessment, I was told that I do not have muscle weakness. The assessment did not surprise me. I have repeatedly told my doctors that my muscles hurt when used and often hurt when not in use.

Have you read any of the current research which has documented that the capsular lining of muscles and bone is inflamed in PMR patients? There is also research showing that bursae may be inflamed. My joints have some osteoarthritic pain, but it is insignificant. I have pain in some muscles that is definitely (in my opinion) specific to a muscle bundle. The bundle which is the most painful is the one from the groin, through the thigh, and attached at the knee. The pain is bilateral, and it does not respond to physical therapy.

The physical therapist suggested that I locate a rheumatologist who specializes in the treatment of PMR. I think that is probably what I should do since I have been dealing with this since October of 2017, and it is not one bit better. Do you have any suggestions of a physician how to begin my search? I tried searching the web this afternoon, but my searches yielded only general information on PMR, not the names of rheumatologists specializing in the treatment of PMR.

@johnbishop

Hello @rachelp, welcome to Connect. I have had 2 occurrences of PMR. The first lasted 3 years at which time I was able to taper off of prednisone. Then it went into remission for 6 years and the 2nd occurrence lasted a year and half and I was able to taper off prednisone this past February. Methotrexate was never offered as a treatment for me by my rheumatologist but I certainly would have tried it the first time around as I really had a problem tapering off. Sometimes just a 1 mg drop and the pain would come back in my shoulders, arms, legs and hands with a vengence. I have no medical training or background but my guess is that pain is pain and I think it would be difficult to discriminate between the two. I did find a short article that talks about it being misunderstood (I think).

Acute steroid myopathy: a highly overlooked entity
https://academic.oup.com/qjmed/article-abstract/111/5/307/4862462

I did find one member who has a profile mentioning he was diagnosed with steroid induced myopathy. @davidgold are you able to share any suggestions or information for @rachelp?

John

Jump to this post

I forgot to thank you for responding to my query. Your response was most helpful.

@rachelp

I saw a physical therapist today. After a strength assessment, I was told that I do not have muscle weakness. The assessment did not surprise me. I have repeatedly told my doctors that my muscles hurt when used and often hurt when not in use.

Have you read any of the current research which has documented that the capsular lining of muscles and bone is inflamed in PMR patients? There is also research showing that bursae may be inflamed. My joints have some osteoarthritic pain, but it is insignificant. I have pain in some muscles that is definitely (in my opinion) specific to a muscle bundle. The bundle which is the most painful is the one from the groin, through the thigh, and attached at the knee. The pain is bilateral, and it does not respond to physical therapy.

The physical therapist suggested that I locate a rheumatologist who specializes in the treatment of PMR. I think that is probably what I should do since I have been dealing with this since October of 2017, and it is not one bit better. Do you have any suggestions of a physician how to begin my search? I tried searching the web this afternoon, but my searches yielded only general information on PMR, not the names of rheumatologists specializing in the treatment of PMR.

Jump to this post

Hi Pauletta @rachelp, I'm able find a list of doctors in the Rheumatology Department for Mayo Clinic Rochester and Arizona just by using that phrase for the Google search. Dr. Thomas Osborn at the Rochester Mayo Clinic was the rheumatologist who diagnosed my PMR and was really good at helping me with my treatment plan. The thing I like about a Mayo Clinic campus is the different areas work together to help patients with difficult to diagnose health concerns. I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: https://www.mayoclinic.org/appointments

When I'm trying to find research on medical papers and articles I will use Google Scholar (https://scholar.google.com/) which allows you to sort the search results by year showing you the latest information on a search. I did a search on the phrase capsular lining +polymyalgia rheumatica and here is the results with 2018 selected to show the newest first.

https://scholar.google.com/scholar?hl=en&as_sdt=1%2C24&as_ylo=2018&as_vis=1&q=capsular+lining+%2Bpolymyalgia+rheumatica&btnG=

I believe inflammation is a large symptom of PMR. My PMR was mostly in the hands, arms, shoulders, legs and joints. The first time I was diagnosed I waited too long to see the doctor and had to use a walker in order to walk. Pain was really bad but after meeting the rheumatogist and being examined, he diagnosed me right away with PMR and prescribed 20 mg prednisone. That was a morning appointment with him and I had another appointment with him the same day in the afternoon. I picked up the prescription and had lunch and by my afternoon appointment I no longer needed the walker. As much as I hated taking prednisone it was the magic pill for me. Dr. Osborn took the time with me to educate me about the disease and the treatment goal of tapering off of the prednisone gradually until the PMR goes into remission however long it takes. The first occurrence for me took 3 years. The second occurrence after 6 years of remission took a year and a half to taper off of prednisone.

Did your doctor offer any treatments or other suggestions for you?

John

Liked by beryl

A quick summary of my experience with PMR : I was diagnosed 1and 1/2 years ago and was put on 20 mg dose which was tapered to 8 mg over the course of 8 months when pain came back and I returned to 10 mg. I have since tapered slowly down to presently at 5mg but have noticed considerable more pain returning especially in the neck and shoulders. I am quite active and I do drink alcohol regularly. I get fevers on occasion and am concerned that this barrier will not enable me to reduce further.
I see my rheumatologist in a month and I want to ask about how long I can expect to be on prednisone and if I should consider methotrexate. Any advice about possible avenues to pursue ?

@obetv

A quick summary of my experience with PMR : I was diagnosed 1and 1/2 years ago and was put on 20 mg dose which was tapered to 8 mg over the course of 8 months when pain came back and I returned to 10 mg. I have since tapered slowly down to presently at 5mg but have noticed considerable more pain returning especially in the neck and shoulders. I am quite active and I do drink alcohol regularly. I get fevers on occasion and am concerned that this barrier will not enable me to reduce further.
I see my rheumatologist in a month and I want to ask about how long I can expect to be on prednisone and if I should consider methotrexate. Any advice about possible avenues to pursue ?

Jump to this post

Hello @obetv, welcome to Connect. I also have PMR which is currently in remission. I can tell you the each of us with PMR is different in the way the disease affects us. My first occurrence of PMR was in 2007 and it took me 3 years to taper off of prednisone. The last 6 months of the first occurrence was going up and in the dosage from 1 mg to 1/2 mg and back up to 1 mg until I was finally able to stop taking prednisone and not have a lot of pain. The PMR went into remission for 6 years and came back in 2016 and lasted around 1-1/2 years. The second occurrence I tapered much slower using smaller decreases in dosage until I was able to stop taking prednisone.

No one can really tell you how long you can expect to be on prednisone since we are all a little different on how the disease affects us. I would really suggest talking to your rheumatologist to see if he can give you some different tapering options to see if you can come up with something that works for you. It might be worth discussing methotrexate with your rheumatologist since it may let you use lower doses of prednisone.

Methotrexate in polymyalgia rheumatica: preliminary results of an open, randomized study.
https://www.ncbi.nlm.nih.gov/pubmed/8730115

@obetv has your doctor suggested any specific tapering schedule for prednisone?

John

@johnbishop

Hello @obetv, welcome to Connect. I also have PMR which is currently in remission. I can tell you the each of us with PMR is different in the way the disease affects us. My first occurrence of PMR was in 2007 and it took me 3 years to taper off of prednisone. The last 6 months of the first occurrence was going up and in the dosage from 1 mg to 1/2 mg and back up to 1 mg until I was finally able to stop taking prednisone and not have a lot of pain. The PMR went into remission for 6 years and came back in 2016 and lasted around 1-1/2 years. The second occurrence I tapered much slower using smaller decreases in dosage until I was able to stop taking prednisone.

No one can really tell you how long you can expect to be on prednisone since we are all a little different on how the disease affects us. I would really suggest talking to your rheumatologist to see if he can give you some different tapering options to see if you can come up with something that works for you. It might be worth discussing methotrexate with your rheumatologist since it may let you use lower doses of prednisone.

Methotrexate in polymyalgia rheumatica: preliminary results of an open, randomized study.
https://www.ncbi.nlm.nih.gov/pubmed/8730115

@obetv has your doctor suggested any specific tapering schedule for prednisone?

John

Jump to this post

Thanks John for your reply.
My tapering rate has been to go down 1mg every 2 months, that is slowly. I feel with the return of pain esp. in my neck that I will have problems going lower. That is why I asked about the Methotrexate to see how others have found it .
I will be asking my doctor about this .
Thanks again.

obetv, I have read that methotrexate is used to treat PMR, and I am going to ask my rheumatologist about using it.

During my researching of PMR, I came across a hospital in New York specializing in treatment of diseases such as PMR. They were telling patients about a new drug , Tocilizumab, which seems to be helpful in combating the effects of PMR. This is their description of their facility: "About HSS | Hospital for Special Surgery (HSS) is the world’s leading academic medical center focused on musculoskeletal health. At its core is Hospital for Special Surgery, nationally ranked No. 1 in orthopedics (for the ninth consecutive year) and No. 3 in rheumatology by U.S.News & World Report (2018-2019)." They are located in NYC, and I am not interested in going to that city for treatment, but I am interested in the results of their research. I plan to ask my doctor about that drug as well.

@johnbishop

Hi Pauletta @rachelp, I'm able find a list of doctors in the Rheumatology Department for Mayo Clinic Rochester and Arizona just by using that phrase for the Google search. Dr. Thomas Osborn at the Rochester Mayo Clinic was the rheumatologist who diagnosed my PMR and was really good at helping me with my treatment plan. The thing I like about a Mayo Clinic campus is the different areas work together to help patients with difficult to diagnose health concerns. I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: https://www.mayoclinic.org/appointments

When I'm trying to find research on medical papers and articles I will use Google Scholar (https://scholar.google.com/) which allows you to sort the search results by year showing you the latest information on a search. I did a search on the phrase capsular lining +polymyalgia rheumatica and here is the results with 2018 selected to show the newest first.

https://scholar.google.com/scholar?hl=en&as_sdt=1%2C24&as_ylo=2018&as_vis=1&q=capsular+lining+%2Bpolymyalgia+rheumatica&btnG=

I believe inflammation is a large symptom of PMR. My PMR was mostly in the hands, arms, shoulders, legs and joints. The first time I was diagnosed I waited too long to see the doctor and had to use a walker in order to walk. Pain was really bad but after meeting the rheumatogist and being examined, he diagnosed me right away with PMR and prescribed 20 mg prednisone. That was a morning appointment with him and I had another appointment with him the same day in the afternoon. I picked up the prescription and had lunch and by my afternoon appointment I no longer needed the walker. As much as I hated taking prednisone it was the magic pill for me. Dr. Osborn took the time with me to educate me about the disease and the treatment goal of tapering off of the prednisone gradually until the PMR goes into remission however long it takes. The first occurrence for me took 3 years. The second occurrence after 6 years of remission took a year and a half to taper off of prednisone.

Did your doctor offer any treatments or other suggestions for you?

John

Jump to this post

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.

@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

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.

@rachelp

obetv, I have read that methotrexate is used to treat PMR, and I am going to ask my rheumatologist about using it.

During my researching of PMR, I came across a hospital in New York specializing in treatment of diseases such as PMR. They were telling patients about a new drug , Tocilizumab, which seems to be helpful in combating the effects of PMR. This is their description of their facility: "About HSS | Hospital for Special Surgery (HSS) is the world’s leading academic medical center focused on musculoskeletal health. At its core is Hospital for Special Surgery, nationally ranked No. 1 in orthopedics (for the ninth consecutive year) and No. 3 in rheumatology by U.S.News & World Report (2018-2019)." They are located in NYC, and I am not interested in going to that city for treatment, but I am interested in the results of their research. I plan to ask my doctor about that drug as well.

Jump to this post

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

@johnbishop

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

Jump to this post

I 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.

@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.

Jump to this post

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

@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

Jump to this post

I did but it is in a different thread

@carley

I did but it is in a different thread

Jump to this post

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.

Please login or register to post a reply.