My Lupus Story
Last updated: May 2023
It took 29 years to definitely be diagnosed with systemic lupus. I was nearly 31, (1979) when I was pregnant with my second daughter.
Lupus and pregnancy
Lupus was questioned due to toxemia again. First pregnancy (1975) with daughter one, I had toxemia at 30 weeks. Kim was 2 pounds and 14 ounces. I lost a baby in 1978. Due to being diagnosed so late, the systemic lupus affected my heart, lungs, and neurological systems.
My flares occur monthly, and include: shortness of breath, migraines, exhaustion, as well as pleuritic pain. Some days are better than others. I tried Plaquenil. After 10 years, it became ineffective.
In 2022 I tried Imuran, but that never helped. I go on monthly prednisone tapers. However, when I get down to 30mg, the flares start up again.
I see my rheumatologist every 8-12 weeks. Many meds he could put me on have had more dangerous side effects than the lupus itself, so he won't prescribe them. I take life one day at a time.
How are you most likely to respond when someone offers you unsolicited advice about your lupus?