What has your experience with SLE, Systematic Lupus been?

I have SLE with major organ involvement. At the worst it was heart, lungs, bone marrow, blood and kidneys along with some cognitive dysfunction.

In hospital, 5 years ago, I had lung tap, all kinds of scans, upper and lower GI tests, bone marrow biopsy and then pulse IV steroids, IV methotrexate, IV antibiotics and breathing treatments.

Six months later I had a kidney biopsy and went on Cellcept. For people who tolerate it, Cellcept is a nice alternative to cytoxan. There are less side effects and it can be taken in pill form rather than IV infusion.

Now the protein in the urine (24 hours) just hit lower than 100 mg. I am only on plaquenil 200 mg 2x a day and 250 mg Cellcept. I work 7 days a week but not full days. I also manage to practice yoga and meditation at least once a day and walk 2 miles each day. I have been off disability for a year.

I use hand sanitizer and try to stay away from sick people, get a flu shot annually and see my rheumy every three months for a complete blood count, complete metabolic panel, 24 hour urine with creatine clearance.

Why cytoxan? Do you have kidney or other major organ issues? Cytoxan can cause infertility so you might want to explore other options first. There are some good clinical trials going on. You might want to check those out, too.

I have SLE with major Kidney involvment (stage 4). I have been on Cellcept since July 07 and it has worked wonders! The reason I did not go with Cytoxan was because it more often then not makes you infertile, and I am a 26 year old female with no children. This is why I decided go with the less certain path of Cellcept. This medication combined with Prednisone has worked extremely well for me. All of my kidney functions have returned to normal, as have all of my other blood tests.

Linda is right on with "why Cytoxan". It does cause infertility and cause many other issues as well. It is a chemotherapy agent. After my wife received her second course of cytoxan she had heart failure and eventually had to have a defibulator/pacemaker put in. It is a nasty drug but one that many rheumatologists still like to use. I agree with the Cellcept angle. Myfortic is another choice it is the newest form of Cellcept and is time released which can help with some of the stomach issues that happen with Cellcept. 2 grams of Cellcept daily is the recommended dosage and this can cause some stomach problems as it did with my wife. She has found that the Myfortic is much more tolerable and titrates better. Also Prednisone may be warranted depending on the amount of inflammation that is occuring. As far as Plaqunil...this is more of an 'old school' therapy for Lupus. Many rheumatologists are starting to steer away from this treatment but it still definately has it's place in the arsenal. If you do have organ involvement as Linda and my wife do there may be many other medications you may have to take...currently my wife takes 14 medications a day for heart issues, blood issues, joint problems as well as to keep her immune system in check. The best part about it is that she still manages to live a fairly normal life. She, like the lady above, works full time and is a dentist. We have two adopted children and are very active. There are times of hospitalization and fatigue and other issues from the Lupus but we have chosen to control Lupus and not let Lupus control us. Diet, exercise and reducing stress are all very important too. Family and friends support is imperative. We run and participate in two different Lupus support groups as well as provide educational materials regarding the latest news and facts to health care professionals which leads me to my final point.

You need to make sure that you've been tested for Antiphospholipid Syndrome or APS. This is a disease that often 'piggybacks' with Lupus. Over 50% of Lupus patients have this secondary disease yet only 25% of them have actually been tested for it. It is a clotting disease that causes your blood to clot and cause heart attack, stroke and embolism. It is belived that many of the deaths that have been attributed to Lupus are often caused by APS. It is a simple blood test that your doctor can run but DON'T ASSUME that he/she has taken it. If you are found to have it you'll have to take blood thinners like warfarin but with it in check you can live a normal and happy life. Good luck to you!!

Oh one last thing you may want to check out before trying Cytoxan...that is Rituxan....this medication was initially FDA approved for RA but has really worked well with Lupus. It targets the "B" cells of the immune system only rather than just knocking the whole thing out like Cytoxan. For this reason it seems to have much better tolerance for patients. Check into it before agreeing to anything.