Lupus and My Medication Journey
Last updated: April 2023
Since getting diagnosed with lupus in July 2017, I have been on a medication adventure. I learned early on that there was no one size fits all plan for people with lupus or the autoimmune population. What may work for one does not necessarily mean it will work for others. It was a lot of trial and error when I first got diagnosed. I tried many medications and different dosages until I finally found the right combination that helped me.
My lupus medication journey
Plaquenil for pain and inflammation
The first medication that I was on was hydroxychloroquine (Plaquenil). This is the most common medication that has been prescribed for many who are diagnosed with lupus. This is a type of antimalarial medicine that helps reduce pain and inflammation. I started taking 200mg a day and then increased it to 400mg. I am still taking this medication, but I alternate my dosage from 200mg to 400mg every other day. Many who take this also must see an ophthalmologist since, in rare cases, it can cause damage to your eyes.
Prednisone for flare-ups
Another medication that I was on was a steroid called prednisone. I have such a love/hate relationship with this medication. Prednisone also helps to reduce pain and inflammation and has helped so much, especially on flare days. But, prednisone has many side effects. I was on this medication for months and slowly began to taper down. I did feel better but experienced a moon face and gained so much weight in months. I was so happy when I could wean off this medication completely. Occasionally, I take steroids only for a few days when I flare up.
CellCept for kidney issues
Plaquenil and prednisone were not enough for me. Protein was still leaking in my urine, which meant my lupus was still attacking my kidneys. So, my doctors introduced mycophenolate mofetil (CellCept). Cellcept is an immunosuppressant that helps stop your immune system from attacking healthy tissue. But it also means it's harder for our bodies to fight off infections. I tapered my way up to this medication. I started at 500mg and worked my way up to 2000mg. With this medication, I was warned that I should not get pregnant. This medication was not safe for the baby. So, when I was on this medication, I was very careful and did not try to conceive.
Cozaar for blood pressure
Unfortunately, even with those medications, my lupus still attacked my kidneys. So they had to add another medication. This time they added losartan (Cozaar). It’s a medication used to treat high blood pressure but also treats kidney disease. With this medication, I was warned that I should not get pregnant either. This medication was also not safe for the baby. So, now I was on 2 medications that would have bad side effects if I got pregnant, so I was extra careful now and did not try to conceive.
My medication combination
Finally, after all that trial and error, we finally found the perfect blend that worked for my body. I was on this for a couple of years until my doctors noticed that I was not getting better, but I was also not getting worse. I sort of just plateaued. Some of my labs were still not in the normal range, but they explained that it was my new normal. Since I was engaged and going to be married soon, I asked my doctors if there was a possibility that I could wean off of the CellCept and losartan and see what would happen with my body.
They all agreed that I could slowly taper down. They didn’t want to stop all medications completely. They wanted to see how my body would react slowly and again. We would have to re-evaluate and plan ahead if there were any issues. Luckily, every time I reduced my dosage, I was still within my new normal range until I was off CellCept and Losartan one day. The only medication I was on was just Plaquenil. I was beyond ecstatic and couldn’t believe it.
Unfortunately, even though my labs were ok, my CT scans said otherwise. My last CT scan showed that more cysts were appearing in my lungs. My doctors believed since I was off of CellCept and Losartan, my lupus was more active and, this time was attacking my lungs. Since my husband and I are still considering starting a family, they decided it would be best if I started Azathioprine (Imuran). This was also an immunosuppressant but was safe for pregnant women. So, I hope this medication will help slow down the progression of the cyst in my lungs.
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