Has anyone w/Lupus taken a treatment called Cytoxan

nataliecarter2

My doctor wants me to try a treatment called Cytoxan, a form of chemo, for my Lupus and low blood platelets. I was wondering if anyone knows the effects of this treatment through having taken it yourself or from word of mouth. I am nervous about starting this treatment. I will have to go once a month for a year. Any information will help. Thanks & God bless.

trblmakr23

I've been on it twice. Had days of extreme nausea, and then some other days the nausea was tolerable. I did lose some weight from that, but mainly because I didn't dare to eat when i was nauseous for fear of vomiting. My hair thinned out quite a bit, but I have thick hair so not really noticeable to many people.

I was put on it for kidney issues from the lupus, which it seemed to help out quite a bit. I had to do it 5 days a week for 8 weeks..then had a couple of weeks of no treatment then start second cycle again.

So maybe once a month might be very beneficial for you, and maybe not that much side effects other than periodic days of nausea a few days after your treatment,if at all. If I had to do it again, and do it with your options..I would go for it.

nataliecarter2

Thank you so much for your input, I start the treatment next Thursday, I guess everyone reacts differently. I have heard that nausea is very common though, so I'm not sure if I should even eat before I go, or wait and see how I feel after??? Yours definitely sounds like it was more intense. Thanks again, I hope you are feeling better.

trblmakr23

There are medications for nausea. My doctor tried me on reglan and compazine supps, but I didn't find any of those effective for me. But there are many many others that your doctor could try if nausea is an issue for you.

I don't know if you're in the US or not, but if you go grocery shopping or to someplace like walmart look in the OTC medications for something called Sea Band wristbands for sea sickness. I think it's about 10 bucks. But I've had some success with that. It's a wristband that uses pressure on the wrist to stop nausea. It's worth a try, especially early on in your treatments when your doctor is hesitant on putting you on something for nausea. LOL that worked wonders for me when I was pregnant years and years ago, and I forgot all about that till towards the end of my treatments. Might be worth a shot though.

I am doing much better though after those treatments. Have had slight flares since then, but nothing major major. So it was worth it for me. I wish you well, I hope for great success for you too on this treatment.

nataliecarter2

Thanks again, I am really glad to hear that the treatment has been successful for you, that is my same hope and prayer for myself going into it. I actually live in California, so there are Walmarts everywhere. Lol. My doctor did mention that he would be giving me something for the nausea, so hopefully it works. If not, I will Definitely give the Sea Bands a try, there is nothing worse than feeling nausea for me. I wish you continued success with your Lupus. :-)

tig_ol_bitties

I had to do a different form of chemo for my kidney issues as well, on two separate occasions. I was put on Methotrexate, which, when I researched, isn't all that different from the Cytoxan. I lost a lot of my hair, but not all. I ended up cutting it short to make it less noticeable. The nausea was overwhelming at times, and it made me even more tired than I usually am. I see it's been about a month since you posted, so I hope that everything is going well with your treatment.