Hey there!First off...have you tried Cellcept or Imuran? I am not seeing that on your med list and can't remember if you have said anything about them in the past. Cytoxan is generally used if you are found in kidney failure or severe brain involvement. or if you do not respond to other treatments such as plaquenil, Imuran, Cellcept, Methotrexate.
I did Cytoxan for 8 months and it is deffinatly worth it. Many people might see this as odd but at the time, I felt the best I had felt while Cytoxan. The First week after it is quite tiring but is worth it. Especially if your lupus is attking your heart and lungs, it will hopefully be what they need to calm down again, if you are not responding to the safer lupus meds.
They put me on Lupron, to help save my ovaries. It put me in medical menapause and I did have symptoms of menaupause. Night Sweats (bed drenched), turning red all over in a matter of seconds, moodiness) After the first month, it generally gets better. I am 23 now but at the time they thought I would change my mind and want to have kids so they were keeping my options open.
I would go in once a month to the outpaitent cancer center at my hospital. They gave me about an hour of fluids, then 30 minutes of Mesna (drug to help protect bladder) and then 30 minutes of Zofran. Then I got the hour of Cytoxan followed by another 30 minutes of mesna and then an hour to two hours for fluids. So when you go, plan to be there all day.(at least in my case) Especially by the time they take your blood work and get it sent to the lab. Before they give the Cytoxan, they have to have a test come back showing you are not pregnant...No matter how much I told them it was not possible, they still had to test me!
Side effects for me where mild. I did have to do extra fluids and mesna because immediatly after the cytoxan, the next trip to the bathroom showed pink/red urine which meant it was messing with my bladder. If you do decide to do Cytoxan, pay close attention to your urine, allthough I am sure if you p a redish color you will notice right away! Let your nurse know who is giving you the cytoxan so they can contact your doctor. Cytoxan is known for bladder cancer so please dont overlook this symptom. I did lose my hair but had fun with wigs and hats. My WBC dropped freakishly low( the lowest was at .8) and I was put on house arrest by my doc. Was not allowed to go anywhere, they also started me on Bactrim to help prevent infections. After a few months i started losing my color and turned a gray/ashy color but felt better than I had felt in about a year because the pain was gone for 2 weeks outta the month. I was also exhuasted. If you are working full time, I would considered dropping down your hours to at least 6 hrs a day so you can get the rest you need! I thought I was able to work through it all and almost made it the 8th month of treamtent but just couldnt. I had to do short term disability and caught up on some much needed rest!!!
Please let me know what specific questions you might have...Those are just a few of the things I could think of this early in the morning!!!!
Cyclosporine, Prednisone, Lisinopril,Norvasc, Mobic, Vitamin D 50,000 units
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram,
If God brings you to it, he will get you through it!!