Hoping And Coping
My name is Myrna. I am 54 years old, a mother of two sons and one honorary daughter and a grandmother. I teach little kids to speak French, publish literary fiction and poetry, direct a choir, sing and travel a lot. I have had to give up figure skating, cross-country and downhill skiing, portage canoeing and some dancing because of this disease. BUT! Oh the life I do live is just grand!
I was first diagnosed in 1992, but back then MPA was still called PAN. My fist signs and symptoms appeared in 1991. I had fatigue (winded feeling), swelling in my ankles marked with red lesions, toes so hot, swollen and sore that I couldn’t put a bed sheet over them, a frank arthritis and a strange feeling that I would sink through the floor. My family physician prescribed various NSAIDs to control what she thought was arthritis.
In January of 1992 the swelling became so marked that I could not wear my boots. I had a rash – lupine like lesions on my face. I couldn’t even manage the Phys Ed component of the job. I went back to my family physician who told me that people in their forties often got arthritis like that, and that this was a natural part of aging. I managed to convince her that perhaps blood or urine tests might reveal something that would lead to a better treatment. Reluctantly, she ordered blood work and a urinalysis.
A few weeks following the tests, she called to tell me I needed to see a rheumatologist because I had a SED rate of 52. I made an appointment with the rheumatologist she suggested – for six months later.
The NSAIDs seemed to help and the swelling started to subside. In the meantime, I lucked into a cancelled appointment at the rheumatologist’s. She ruled out lupus and rheumatoid arthritis but wasn’t yet sure of a diagnosis. She repeated blood and urine tests and as the swelling had abated, I could palpate thousands of little pea-sized nodules and so at my follow-up appointment, I asked the rheumatologist if that always happened after swelling subsided. At that point the rheumatolgist ordered a biopsy on one of the nodules. I had happily been teaching all this time, and in June- six months after my first doctor visit, I received a call from the dermatologist that the biopsy indicated PAN – a life-threatening form of vasculitis and that I needed to go to the hospital immediately for an angiogram, 24 hour urinalysis and a nerve conductivity test.
At that point the disease seemed to be abating of its own and my SED rate had dropped to 32. I was started on a course of prednisone (40) mgs and returned to work the next day.
I thought the meds had cured the disease as I recovered rather quickly and all went well for about two years until I flared again. The flare presented itself the same way. This time only 20 mgs of pred were needed. As I had concentration problems, the doctor ordered an MRI to rule out cerebral involvement. I waited 18 months for the MRI. By then I was fine again. In the meantime an appointment with a nephrologist lead me to understand that my form of the disease was actually MPA. She could see crescentic casts of microscopic blood in my urine. I was still clearing enough protein, so no treatment change was necessary.
In 1999 I needed a total hip replacement – osteoarthritis? I guess too many doses of prednisone took the cartilage from my hip. I also lost the retinas in my eyes (could that have been the MPA?).
The next flare I had was the most severe. It came very suddenly and within 24 hrs I didn’t have the strength to walk to the front door. I was prescribed 40 mgs of prednisone , but within a month things became worse. I had unpredictable and sudden shooting pains that would dissipate as quickly as they came, incredible fatigue, shingles, and mouth sores. I still looked pretty good and all around me family and friends and colleagues whispered about how I was “faking” the illness or “having a nervous breakdown”. I felt under siege both physically and emotionally and family and friends seemed only to add to my ills.
The rheumatologist ordered rest and 15 mgs of methotrexate along with the 40 mgs of prednisone. I lost an entire year of work and could only return on a half-time basis the following year. For four years now I have been on a combination of prednisone(10 mgs) and methotrexate (25mgs) which I inject to cut down on the nausea. Things are going well, except for some fatigue and some thinning hair.
I feel lucky. I have fatigue and some “blues” while on prednisone, but other than that, my life is good. All seems to hinge on self-discipline – daily water exercise, some weight work, no caffeine, no salt, adequate rest, no smoking or drinking and a really positive outlook. I find the humor and joy in every day and avoid negative people and situations. I live in a constant whirl of pleasurable activity with people I have discovered to be my true friends.
Through these MPA years, I have traveled extensively, taught school, written and published, sung opera and been a spoiling grandmother. I believe the key to survival is to embrace life and to treat hip replacements, sight issues, the arthritis, the fatigue, the pain, the skin lesions and whatever this disease throws at me as simply little annoyances.
Published: December 2006
To read more stories, please visit the Vasculitis Stories landing page.