Lupus and Cellcept: Slowly Tapering My Way Down

Gosh - I've been delinquent in celebrating my medication victories over here!

Every step you make toward living well with lupus is worth rejoicing over - big or small. Even the ones where you are the only one to notice the impact. 

I've celebrated baby hairs sprouting on my head after hair loss, rejoiced over swelling that's gone down just enough so that my wedding ring spins around again, and cried happy tears over favorable test results, improved labs, and insurance wins. 

They're all worth noting. 

Some victories give us the physical boost we need. Others, a financial victory that our pocketbook needs. Still others provide an emotional lift to our psyche that allows us to keep heading in a positive and constructive direction.

My latest victory - reducing Cellcept to one 500 mg pill every other day - feels like it's all three! 

I've been on CellCept for almost 20 years. I've been as high as 3000mg a day, and as low as 1000mg a day, but never off of it completely. 

With my doctor's blessing/coaxing, I started a slow taper off Cellcept in 2024. You can read about my hesitation, but ultimate willingness here. 

We've reduced the dosage incrementally - starting with 1000mg one day/500 mg the next - and worked our way down from there. Every appointment, every reduction - neither of us assumes too much, or expects anything. We simply reassess and decide if we're going to keep going, pause, or return to a higher dose. It all just depends on how my body responds. I'm comfortable doing it this way, and I like having the security of knowing that no move is a forever decision. She's not set on having me off CellCept completely, and neither am I, but we both know how we plan to keep proceeding. 

I like the lack of agenda, yet the structure of a plan, if you know what I mean. I love my doctor for her sensitive bedside manner, but also her willingness to nudge me when I need it. 

Emotionally, I love the idea of being less dependent on medication. Financially, the prescription cost is less. And physically, I am a little less tired during the day. I'm fairly certain it's due to extra sleep in the morning and a daily B12 supplement, but my doctor did wonder if reducing Cellcept would give me more energy. She couldn't really explain why, she just thought it was a possibility. Medical mysteries that result in positive outcomes, we accept! 

So there it is. I'm down to one Cellcept every other day. 

It seems like a minor miracle when you think of how sick I've been, and how much the Cellcept has helped in the past. 

Doing victory laps over here. Any minor miracles or baby steps you want to celebrate?