Questioning my diagnosis of PMR
I am a 72 year old female. I started having symptoms 5 years ago. It came on very suddenly as weakness in my legs. I never considered it pain. I feel like my legs are not going to hold me up. My PCP referred me to an orthopedic surgeon who decided it was referred pain. This made no sense to me as my knees never bother me. Injections in my knees did not help. In January of 2021 my legs completely gave out. I was unable to get myself out of a chair and had to call 911. After the ER, I was sent to rehab, where I was put on steroids which quickly got me up and around.
I was referred to a local rheumatologist who also told me it was referred pain. Since I live in western Mass I contacted a hospital in Boston and saw a rheumatologist there. He did not accept the referred pain idea although he did say my presentation was very unusual. I was sent for numerous tests including a nerve conduction study. Every test comes back negative. He also had me seen by a neurologist who determined there was no neurological involvement. In the end I was given a working diagnosis of PMR. All my issues are in my legs, nothing above the waist and my knees are fine.
My biggest struggle is raising my legs. Navigating stairs is a major challenge. I have to hold onto a banister with both hands and pull myself up using the banister and door jam. Stepping off or onto a curb is also difficult. I can walk for short periods of time, up to 20 minutes before needing a break. I am constantly tired.
I am on 8mg of prednisone now and am supposed to decrease to 7mg in July. I really want to step it up to 10mg to see if I get relief. I tried 15 mg of Methotrexate as a sparing agent and that did not help. I am currently on 10 mg of Lefunomide without improvement.
As I read the comments of others, I wonder if indeed I do have PMR. I do not experience pain, or possibly I just think of it differently. I’m not sure what people experience when they go into remission or have flair ups. My symptoms are constant. With the exception of my bout in the hospital, which left me with the difficulty navigating stairs, I feel my condition is unchanged.
Your anticipated comments will be most appreciated. Thank you for taking the time to read this.