Lupus Support Group

Hey everyone.

My name is Kameryn. I'm a 20 year old girl and I've been diagnosed with Lupus for a year now. I need lots of advice and support! I've gotten a kidney biopsy and while there isn't any damage currently, I'm leaking protein so that is causing concern amongst my doctors. I was on Methotrexate, and Cellcept but my kidneys stopped responding so my doctors are adamant about starting me on IV Cytoxan treatments monthly. I'm terrified of the actual chemo treatment and of the risk of becoming sterile. I would be starting Lupron shots before the Cytoxan but there's still no guarantee my ovaries will ever fully recover. I'm just looking to get advice from anyone who's been through a similar situation. Thank you!

Hi. You could ask the hospital where you will be getting the chemo to get the eggs extracted and frozen for future use.

Yeah I would really like to do that and I've looked into it a bit but the cost is insane and there's no way I could afford it. So, not sure if it's an option

There are other ladies on the forum who have received Cytoxan, but I think our friends are much older than you. I am sure they will give them their advices upon waking.

Thanks!

Hi Kameyrn....Welcome to this fantastic support site. I started on Cytoxan in July of 2009 and was doing this every other month.....it did make me terribly sick the first time I took it so I started getting smart and taking my anti-nausea pills the night before the morning of the night of and the morning after and it helped immensly. I stopped taking this drug in December of 09 because it wasn't quite helping me the way I needed it to so my Rheumy switched me to Rituxan as I can take that longer, Cytoxan is not a drug you can be on for long periods of time. I am also older then you and had to have a hysterectomy in 1993 so this was a non issue for me. I know others will chime in soon to answer your question. Cytoxan is a pretty powerful drug, did your doctor ever recommend Benlysta or Rituxan? I have been on a lot of drugs and so far the one that has helped me the most is Rituxan. I wish you the best and I hope the other members here can help you with this question.

Eva

Thank you Eva!