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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