My Journey with Polymyositis

My Journey with Polymyositis

I have polymyositis and was been diagnosed 28 years ago. Despite ups and downs in my treatments, my motto "Hope, Courage, Strength" keeps me going on my journey!3 min


My Journey with Polymyositis

I have polymyositis [PM], having been diagnosed 28 years ago. The diagnosis was confirmed after six months of testing.

I was working in the fitness field as a personal trainer and a group fitness instructor when I started feeling weak, unable to climb stairs like I normally could. I thought I was over exercising.  I was going to start school to become a Physical Therapist, but I had to put my career plans on hold.

When the diagnosis confirmed from a biopsy that it was PM, the doctors thought it might be ALS, my treatments started. Initially, the doctors told me they thought it would burn out because I was in good physical condition. I was an athlete, growing up doing gymnastics, cheerleading, softball and even played college softball.

The years passed, with multiple flare-ups, so that this wasn’t the case.  My battle had just begun. I was started on a high dose of prednisone and then tapered down. At the time I had just been married to my college sweetheart Stan and we wanted to start a family.  We decided to wait five years to see how this disease progressed.  I was on a low dose of steroids for five years when I got pregnant with my first child, a son. The pregnancy was the best I had ever felt since being diagnosed but the doctors told me that I would probably have a relapse after the pregnancy. I had a normal birth, went full term and delivered a healthy baby boy, named Thomas.

Unfortunately, the doctors were right.  After the delivery, I did relapse and was again on a high steroid dosage. I started feeling stronger and became pregnant again with my second child. This pregnancy took its toll on me. There were a lot of issues early on.  My baby girl came one month early and was delivered by C-section. I had a healthy baby girl, Samantha, and am blessed to have two children today. This pregnancy left me the weakest I had ever felt.

I then started to seek treatments other than prednisone.  I got involved with the National Institute of Health [NIH] in Bethesda, MD and was tested for different options. I started treatments such as IVIG as well as other meds, like Methotrexate, Imuran, Cellcept, Antibiotic Therapy, Enbrel, Acthar, etc.  The meds would provide some relief and I would bounce back and be able to take care of my children with the help of my husband, my mother and sisters.  I wasn’t able to work during this time but I was able to take care of my children.  When my children entered Elementary School I started to work again part-time. I continued to exercise as I thought that would help me and I loved to stay healthy in my mind and body.

After years of being on long-term steroids, I started to develop side effects, such as osteoporosis, and developed fractures in my spine. I ended up needing two spinal surgeries with the last one being a spinal fusion, both very difficult to recover from.

After the last spinal surgery, it seemed I became prone to other issues and had multiple surgeries and infections that I am still dealing with today.  It’s been 28 years and I’m still struggling, unable to work, but I continue to stay as healthy as I can by working out and staying active, trying to keep my muscles and bones strong.  It’s a battle but it’s up to me to stay positive and take one day at a time with the hope that one day there will be a cure for this disease.

I am my own advocate, trying to stay current with any new treatments that come out. Currently, I am tapering down on the prednisone and I alternate between 10/15 mg per day.  I was doing Rituxan treatments that started when I became involved in a clinical study at The Hospital for Special Surgery [HSS] in New York City. This treatment jump-started my muscles rebounding, allowing my CPK’s to reach into the 40’s. I still feel that most of my weakness today has been caused by long term steroids (steroid myopathy). I continue my workouts, PT, Massage Therapy, acupuncture and meditation.

We have since moved to Florida due to the warmer weather, which would be better for my pain, and economically I cannot work so we figured it would be better. However, the move has been hard and I’ve had a few setbacks, which have been difficult to overcome. I’m trying to find the right team of doctors to treat me and I am keeping positive that I will get back on my feet again.

I’ve been blessed with a loving and supportive family, my support dog named Hope, and friends to get me through the day. I enjoy getting out and enjoying the beautiful scenery.  It makes me feel peaceful. My motto is “Hope, Courage, Strength” and I try to remember that each and every day.

This is my journey and I’m going to make the best of it!


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Ellen Armour