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bethangelbug
01-18-2007, 06:06 PM
My name is Beth. I am 40 yrs old and have probably had lupus my entire life but was not diagnosed until age 32. I am in right renal failure. I am on so many meds, as I am sure many of us are, but the cytoxan is the worst. I am happy to have found this site. Grace and Peace

MARYCAIN
01-18-2007, 06:44 PM
Hello, Beth. Until a month or so ago I was on cytoxan too, right now I'm on a cytoxan "holiday" to give my immune system a chance to recoup. I've had acute kidney failure that required dialysis, so I can certainly relate to what you're dealing with. Cytoxan is a nasty - are you doing the IV or the pills? I think you will find many warm, wonderful people on this site - I hope it helps you to come here and talk to other people dealing with this disease.

Saysusie
01-19-2007, 09:24 AM
Hello Beth :lol:
welcome to our forum and to our family! As Marycain stated, Cytoxan does have some pretty bad side-effects. The benefits to prolonging the life of the kidneys is of great value, however. The drug is also known for reducing the symptoms of the disease itself and reducing the need for steroids. But, yes, it is a very potent drug and, as such, has very nasty side-effects.
There are some things you should look out for while taking cytoxan - it can increase your risk for infection and pneumonia, it can reduce your red and white blood cell count which can affect your bone marrow, it can reduce your ability to form clot platelets and can cause hair loss. Your doctor will probably want to do regualr blood tests to keep an eye on these issues.
There are quite a few members here who are (or have been, like Marycain) taking cytoxan and who may be able to give you some ideas on how to deal with the side effects. I hope that you begin to see some improvement soon. In the meantime, we are here to help you, to listen to you and to give you as much support and understanding as you need!

Once again, welcome
Peace and Blessings
Saysusie

bethangelbug
01-19-2007, 10:16 AM
I thank you all for your kind words. I am pretty well aware of all the cytoxan side effects as I have been taking it on and off for over 8 years. I also have had cancer and suffer from fibromyalgia. I have never been in remission with this disease. My daughter, age 14, also has lupus but luckily has only suffered migraines and had some protein in her urine. I am hoping that she never has nearly the trouble many have had because she was diagnosed so early and her doctors keep track of her. Again...thanks for all you kind words. Grace and Peace