When I first got diagnosed with Lupus I had shortness of breathe, my joints were aching, my legs and feet were super swollen, I had protein leaking in my urine, I had super sharp chest pains, there was fluid around my lungs, I was anemic, I was sensitive to the sun, etc. So, finding the right medications that worked for me was a long journey. There was a lot of trial and error when it came to my medications. Trying this, removing this, increasing/decreasing dosages, etc.
They told me the most common medication for patients with lupus was plaquenil and prednisone and that was what I was going to try first. If I got better, this was also going to be another confirmation that I indeed had lupus. So, I was started on 200mg of plaquenil and 30 mg of prednisone daily. Luckily I could see a difference in a matter of days. My legs and feet were no longer swollen and I could actually fit into my own shoes. I stayed on this combination for about 3 months until I had tapered down my prednisone. My vitamin D levels were also low so I took 2 vitamin D capsules once a week.
By the end of the 3 months, my legs and feet never became swollen again and my joints weren't hurting anymore. I still had shortness of breathe and the sharp chest pains were still there. But, they weren't as severe. My blood work still was abnormal and my urine still had protein leaking so my rheumatologists added on cellcept along with my 200mg of plaquenil. I started off with 500mg and eventually increased to 2000mg of cellcept.
During this time, I also got pneumonia and was hospitalized so my rheumatologists told me to stop the cellcept only until I was discharged and done with my antibiotics. The fluid around my lungs had increased and on my CT scans there was fluid also around my heart. I restarted cellcept at 1000mg, prednisone at 60mg and plaquenil at 200mg.
The prednisone really seemed to help because on my next CT scan 3 months later I was showing improvement. But, protein was still leaking so my nephrologists added on losartan at 25 mg. They also increased my cellcept dosage back to 2000mg. So, at one point I was taking 14 pills a day. I had to get them in pill organizers or else I would just forget.
Eventually I was able to wean of prednisone completely. I then just needed to take 200mg of plaquenil, 25 mg of losartan and 2000mg of cellcept daily along with 1 capsule of vitamin D once a week. I no longer had protein leaking in my urine, no longer felt any joint pain, no shortness of breathe, etc. But, my labs were still not normal. I also still feel very tired from time to time, I'm still super senstitive to the sun and brain fog is just the worse. My rheumatologists explained that I had pretty much plateaued and this I guess was "my" normal.
Since I had been consistent with my meds and my test results were considered "my" normal, I asked my doctor about the possibility of stopping cellcept and losartan. I was diagnosed with lupus when I was 27 and I am now 31. I plan on having a family of my and I rather it be sooner than later. Cellcept and losartan are a big NO if planning to get pregnant or if pregnant. So, I decided this was the best time to discuss my options. I got the OK to start tapering down and my doctors have been monitoring me carefully. But, so far still no protein which is what they are really concerened about. I am hoping to completely stop cellcept and losartan. But, if there are signs of protein or if my labs go above "my" normal, imuran will be added.
Its been a roller coaster ride since my diagnosis. But, I am really thankful of how far I have come.
XOXO,
Geri
