04-11-2007, 03:59 AM
I stard Cytoxan today. I am very nervous. Everything that I have read tells me that it can be very halpful in slowing down the progression of SLE, but I am still afraid. I would like to hear anyones stories. It is helpful to hear from others who have been there. Thank you.
04-11-2007, 06:43 AM
I haven't been on Cytoxan myself, but I was with my mom when she did it. Her worst side effect was nausea, but it was countered with some pretty good meds. She lost some of her hair, but not all of it. It thined out all over, not like bald spots. I want to say she was on it for 3 months, but I can't remember exactly. It seems like 2 life times ago.
The bigges thing is make sure you get plenty of rest. The doctor told my mom that she should take a leave from work and rest so that her body could get the full benefit of the treatment. She didn't do it and as a result she was very run down.
I wish I could tell you that it made a huge difference in her condition, but you have to keep in mind that medications, a lot like the disease, react differently for everyone. Even though it didn't seem to help my mom that much, it could make a WORLD of difference for you!
Good luck to you! I will keep you in my prayers
04-11-2007, 08:15 AM
I have been off and on cytoxan for several years now for lupus kidney and neuro involvement. So far, it has been very effective for me in preventing further kidney damage, although it doesn't do a lot to help with the everyday symptoms like fatigue. it is extremely important that you drink plenty of fluids after the cytoxan infusion to prevent the meds from harming your kidneys and bladder. You will be given meds to prevent nausea and vomiting, but you may still experience some nausea, especially the day after the infusion. Things like saltine crackers, pretzels and popcorn can all help with nausea. If you have trouble with water making you feel nauseated, try tea, warm soups or broths, or popsicles. Sometimes sipping through a straw can help. It's better if you can drink water, but if you just can't, drink whatever fluids you can tolerate.
I also experience extreme fatigue for a couple of days afterward, and flu-like muscle aches. Cytoxan can lower your resistance to infection - this can be a real issue if you have school age children. So it's important to wash your hands frequently and disinfect common surfaces that your kids have touched - doorknobs, telephones, the computer keyboard - things you might not think about carrying germs. And you may want to avoid being in crowds for a while until you are sure how your body will react to the medication. Food safety is also important - when your resistance is low, you are much more vulnerable to food and water borne illnesses. So precautions like using distilled or purified water to cook with, cooking all your meats thoroughly, avoiding handling raw chicken with bare hands, and avoiding raw or unpastuerized products are all important.
All of this sounds like a lot to remember, and it can be a hassle at first, but after a month or so, the habits are there and you don't have to think about it as much. It also helps to get your kids in the habit of washing their hands a lot, or using hand sanitizer, so they are less likely to bring something home to you. I have four in school, so it seems like there is always something going around.
Best of luck with your treatment - keep us posted on how things go.