Lupus and Medication: Slowly weaning off Cellcept

Happy Spring! It's been awhile, but here I am, attempting to return to my roots as a health blogger. Welcome to those who are just joining! 

After 25 years of living with lupus, my health is good. I have less pain and more energy than ever. I still get tired every afternoon, but where a two hour nap was a must a couple of years back, now, I'm able to rest for just 45 min and feel good as new. A lot depends on getting eight to nine hours of sleep at night, which I continue to work toward. With two teenagers in the house, our nights run late and our mornings start early. So those eight to nine hours sometime come in the form of seven hours at night, plus an hour to two right after they leave for school. I can still get my day started before 9a, which works for me! 

(And to those of you who have been here from the beginning - YES - Deirdre is 17 and Bernie is 15. Can you believe it??!! Here are the links to the posts I did when they were each born - Deirdre and Bernadette. Makes me tear up just thinking about it!)

By most accounts, I am healthier, more stable and stronger than I was back then. I can't believe how far I've come. In fact, I just recently reduced one of my main lupus drugs, Cellcept, to one pill every other day. Hooray! That is a HUGE accomplishment, as I've taken this medication every day since 2004, with a short break for each of the pregnancies. I've also swapped a few other prescriptions for vitamins or supplements, which feels fantastic. Iron, B12, and Vitamin D have become staples. I also try to fit in 4-5 days of pilates-like workouts a week, walk the dog daily, and watch my gluten and dairy. I continue to be symptom-free (aside from that mild fatigue in the afternoon) and hope every evening that my good health continues. It was not without effort, I assure you, but it was possible. Now I have a whole library of posts to account for the journey! 

My latest medication change involves Cozaar, which I take for lupus nephritis to reduce proteinuria (protein in the urine) and to prevent further disease progression and damage. My doctor is reducing my dosage by half. She's thinking it may be contributing to my fatigue - perhaps because my blood pressure already runs low? I start the lower dose this week, and will now have to report back to her with periodic blood pressure results. When she told me that, I sighed. Turns out I have to report back, not two or three times a month, but two or three times a week!  Just one more thing to add to the list. But if it's one step closer to weaning off the medication, let's do this. 

While I am extremely thankful for my present wellness, our household's focus has migrated to my oldest daughter, who is still searching for answers on several health fronts. I shared that we started working with a functional medicine doctor awhile back, and thank goodness! We have come so far since we first showed up on her doorstep. But we are still looking to complete the whole picture. Over the next few weeks, I'd like to share more about the answers we're still searching for. I bet this community will have a lot to contribute! 

Until next time...