living with lupus, day by day, moment by moment

Each medication I take is tied to a certain emotion and memory. For example, the prednisone I take everyday has a long history. It was one of the first lupus meds I took. It both cured me and threw me into delirium when I took it in high doses. It left visible scars on my body. I love it but fear it. And the fact that I take a daily low dose now feels almost triumphant.

Today I start a new medication #Myfortic a.k.a. #mycophenalateacid, and I am feeling a bit devastated. This is a strong type of #immunosuppressant, a heavy hitter lupus medication. It is a slow release version of #Cellcept, which I was on before.

When I got my first big flare 6 years ago, I went through several rounds of #chemotherapy and was put on Cellcept for years. When I decided to try for baby #2, and my labs were stable, I switched to a less potent (and arguably less toxic) immunosuppressant #Imuran. It felt like a small victory. But lately, my lab numbers haven’t been looking good and my rheumatologist recommended a switch back. It crushed me to think of going back to this med. After spending the last six years eliminating non-essential drugs, I thought I was on my way to eliminating some of these big guys. This feels like such a step back for me. And I am both sadden and reminded of the fact that lupus is a chronic illness. Management always ongoing.

My doctor tried to cheer me up by saying that this is a lateral, not a backward move. I hope so.

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