PMR or Steroid Myopathy

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.

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?

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.

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.

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.

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?