by Guest Author, Levek
Six years ago, my family doctor was worried by my muscle enzyme count and sent me to the hospital for testing and referred me to a neurologist who decided I should be admitted to the hospital where I was subjected to a lot of testing including a muscle biopsy. After 21 days in the hospital, they told me I probably had Inclusion Body Myositis. That wasn’t good news. The dermatologist had ruled out Dermatomyositis. My neurologist wasn’t convinced that it was IBM, so she reviewed the results of the biopsy with the pathologist. She told me that she was convinced that it was Polymyositis and not IBM. I then started the standard protocol, but my CK count was still pretty high and wouldn’t go down. I had lost 30 pounds of muscle in a month. I could not lift my legs, I could not rise from the toilet seat, I would trip and fall, I had to have ramps installed in my house to help me get up and down the stairs. I had to change my car from standard to automatic. If things didn’t improve, I was on the road to a wheelchair. My rheumatologist decided to try immunoglobulin (IVIG). I received six sessions of immunoglobulin lasting four to six hours each time.
Things started to get better and all the while I was on a rebuilding program for my muscles. It took a full year to find the solution. Now, with daily exercise, I estimate that I recovered 70% of my capacities. PM cannot be cured and I must inject methotrexate weekly to maintain my system. My CKs are a bit high, but stable. My rheumatologist is satisfied with my condition and has suggested a yearly appointment instead of every three months. She follows the regular blood testing for liver and kidney problems associated with this medication.
Some special blood testing determined that my PM was probably caused by statins on genetic predisposition.
I am now living a quasi-normal. happy life. If you suffer from Myositis, don’t lose hope.
Tags: myositis awareness share your story
Almost 3 years later, here is a follow-up: It has been determined that I suffer from Necrotizing Myositis (HMGCR Antibody) attributed to statins. I had to stop methotrexate injections due to my gastroenterologist’s suggestion because my liver was problematic. So, I was given azathioprine tablets (Imuran) instead (3/day) but they took some time to act, so I was put on IVIG regimen once more and things returned to kind of normal. Recently, after a test on the metabolites of azathioprine, the dose was reduced to 2 tablets per day. I feel OK and all my specialists have given me yearly appointments, except for the hemato-oncologist who wants to look into my “funny” T cells. I have lost some weight; could be the necrotizing or simply old age…
Take care, everyone!