Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
deleted_user
Hello, I start my cytoxan treatment tomorrow morning. Does anyone have any advise as to what to expect or just advise in general? Are you able to go back to work afterwards? Any insight would be appreciated. Thanks so much.
deleted_user
i went thru cytoxan for 2 1/2 years because the lupus attacked my brain. i hope someone at least told you the basics. first off, they should give you a large dose of decadron in the IV. it should be administered very slowly. they will give you fluids for the first hour at least then the cytoxan. let me tell you...the cytoxan burns your sinuses and you'll probably get a bit flushed. once the cytoxin is done, the burning goes away almost immediately. make sure your dr. gives you a prescription for ZOFRAN!!!!!!! he should instruct you to take 3-4 of them every 4 hours for the first 2 or 3 days. this is probably the only thing that will keep you from throwing up. once you start to feel better, everything will taste awful for at least a week. how often are you having the treatments? i was on VERY high doses of cytoxan so i ended up in bed for almost a week after each treatment. depending on the dose, your gonna feel like crap! i'm not sugar coating anything and i hope your dr. didn't either. by the time you've read this, you'll probably have had your first treatment. sorry i didn't see this post sooner. i wish you luck and if you have any other questions, please feel free to contact me. your in my thoughts and prayers...
deleted_user
Thank you so much Ladyfire. Yep, finished the first dose. That was not a fun experience. I had it done Tuesday and today is the first day I'm back at work. They tell me I have to be on it for about 1 year... treatments 1x month for 6 months then I guess more sparadically after that. They've increased my Prednisone (the drug I hate) to 40 mg. I was definitely feeling like CRAP! Still not 100%, but much better. My Dr. did Rx Zofran... I was told to only take one at a time (the Rx only provided me with like 9 tablets!). They helped - I felt the nausea still, but never threw up...which forced me to stay in bed for 6 days. Thank you so much for your kind words!!! Hope everything is going well with you.
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