Hi I am going to start IV infusions of cytoxan on Tuesday and would like to know if anyone here has used it. It is a very toxic aggressive chemo and I am a little nervous. Side effects are quite scary. I have about exhausted my options and am still getting worse.
Thanks for any info.
Warm and healing thoughts to all.
Joyce
Hi Joyce,
I have had IV cytoxan and had good results from it. I had it for vasculitis but had improvement in all areas so I think it helped with the Sjogrens as well. Do you know the dose you are having? I had a low dose every 2 weeks for six weeks. The side effects were not bad after the first few, but I got more and more tired with each one. I went out to lunch with friends the day after my first infusion! By the sixth I just wanted to stay on the couch for a few days afterwards. I had some mild nausea, constipation, and my GERD got worse. I would do what you need to do to keep those things under control. The anti-nausea meds make the constipation worse. I did have some appetite loss. Just plan on lots of rest and don't put yourself in a position where you cannot stop and rest if you need too. If there are signs you are coming down with something, get to the dr right away and explain you are on cytoxan so that you can get on an antibiotic right away.
I had some hair shedding, but not enough that I worried about it. I didn't need to shave my legs for months which was a bonus!
Remember to drink and drink and drink water. Cytoxan irritates and can damage the bladder. You may find yourself in the bathroom much more than normal. The IV form is safer than the pill form, though.
Sometimes you just need to do what you need to do to get better. I had run out of options when I had my infusions. I felt the results were worthwhile and the side effects were not as bad as I had expected.
Good luck and keep us posted!
Thank you for the post and the excellent information. I feel a bit better about everything. I will be getting it mainly for the polymyositis. My muscles are so weak I am falling constantly. The methotrexate seems to have quit working, I hope it will help the Sjogren's as well. I am sos glad it worked for you.
Many thanks for sharing your experience and a big hug as well.
Joyce