Friday, January 31, 2014

My Story Polymyositis Part One

Now that I had a diagnosis of Polymyositis, my doctors had something to work towards--there were treatments available.  I was placed on 50 mg of prednisone a day and was to have lab work done every two weeks to check my CPK levels.  The goal was for the prednisone to decrease my CPK levels and then tapper me off the prednisone. 

My seventeenth birthday came and went during February of 1998 and my muscles seemed to grow weaker.  I was still having great difficulty rising from a standard height chair.  I would have to place my hands on the seat of the chair and push my body up because my legs alone were not strong enough.  I had to preplan my day in my head so I didn't encounter too many obstacles.  My high school had 4 or 5 steps out front and a sloped grassy lawn off to the side.  Instead of struggling with the steps, I would walk at an angle up the sloped side yard.  By doing this, I drew less attention to myself.  I still tried my hardest to fit in like a normal teenager even though inside I knew my life was anything but normal.

One day, I remember coming down the steps from my Ecology class.  As I was stepping off the very last step onto the first floor hallway, my knee gave out and I fell to the floor.  Books, papers, pens and pencils went everywhere.  I was wearing a jean skirt with tights and a white tank top with a beige cardigan that tied in a bow at top.  There I laid arms and legs everywhere all sprawled out on the floor; I was beyond embarrassed.  How could this be happening to me?  Thankfully, I was given a key to the elevator so I wouldn't have to struggle with the steps at school anymore and hopefully avoid any future falls.  

My lab work and my decreased strength showed that the prednisone was not helping.  Despite being on 50 mg of prednisone a day, my CPK count continued to stay around 10,000-11,000.  In March of 1998, I was bumped up to 70 mg of prednisone a day. 

In the meantime, my mother arranged for me to see a rheumatologist at Vanderbilt in Nashville during April 1998.   Dr. Nancy Olsen reviewed my medical files and decided that I need to add methotrexate (7.5 mg weekly) and folic acid (1mg daily) to my list of meds.  She also suggested that I have an MRI so we would have a baseline to be used for comparison to document the progression of the disease.

Like a good little patient, I immediately begin the new drug regimen that was suggested by Dr. Olsen. Surely my physical condition was about to starting getting better.  My life couldn't go on like this forever…..could it?

I had friends and family that were there for me but I very rarely shared my feelings with them.  I backed myself into a corner where I was all alone.  In my mind, how could anyone understand what I was going through when I didn't really understand it.   I promise this wasn't how I had envisioned my teenage years going.

(Below is a little extra information about the medical terms used….I didn't know what most of them meant at the time.)

CPK (creatine phosphokinase) is an enzyme expressed by various tissues and cell types.  Normal CPK values range for 60 to 400.  Elevated CPK levels can be an indicator to several different issues, one being muscle damage.

Folic acid is a water-soluble B vitamin and  is needed for the proper development of the human body. It is involved in producing the genetic material called DNA and in numerous other bodily functions. (Web MD)

Methotrexate was originally designed as a chemotherapy drug (in high doses), in low doses methotrexate is a generally safe and well tolerated drug in the treatment of certain autoimmune diseases.  The side affects are too long to list and range from diarrhea to death.  (Medline Plus and Wikipedia)

Magnetic resonance imaging (MRI) is a medical imaging technique used in radiology to investigate the anatomy and function of the body in both health and disease. MRI scanners use strong magnetic fields and radio waves to form images of the body. The technique is widely used in hospitals for medical diagnosis, staging of disease and for follow-up without exposure to ionizing radiation. (Wikipedia)

Prednisone is a synthetic corticosteroid drug that is particularly effective as an immunosuppressant drug.  It is used to treat certain inflammatory diseases (such as moderate allergic reactions) and (at higher doses) some types of cancer, but has significant adverse effects. Because it suppresses the Immune system, it leaves patients more susceptible to infections. (Wikipedia)

Polymyositis is a persistent inflammatory muscle disease that causes weakness of the skeletal muscles, which control movement.  Medically, polymyositis is classified as a chronic inflammatory myopathy-one of only three such diseases.  Polymyositis can occur at any age, but mostly affects adults in their 30's, 40's, or 50's.  It's more common in blacks than in whites, and women are affected more often than men are.  Polymyositis signs and symptoms usually develop gradually over weeks or months. (Mayo Clinic)     

1 comment:

  1. You are an amazing person Bliss!!! So glad that I had a chance to meet you. I sure know what it feels like to be out there and feel like no one understands me, because no one had to walk in my shoes but me and they simply don't understand. Looking forward to next part of your amazing story!