Thank you- prednisolone vs. cytoxan

• By BABYWITHFSGS
• Posted October 27, 2009 at 9:20 am
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I know the pred is aweful but for us my son was on pred and enapril for 10 months and had two biopsys before they started the cytoxan! If i were you I would wait as long as possible to start it do to the flu season. My sons neph didn't start it until the spring for us.

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• By brighton
• Posted October 27, 2009 at 11:29 am
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That does seem fast to start on Cytoxan but I know every case is different. My daughter was diagnosed 4 years ago and did great the first year or two , barely relapsing and then it got worse and worse. It came to a point last year where she relapsed inOctober and we were unable to take her off of the Prednisolone at all for a few months. Her Neph suggested Cytoxan several times and we went to Standford and paid privately for a second opinion until we finally decided to give it a try. We started it on the last day of school so that most of her 100 days would be during the summer (and we kept her either ouside or away from groups of people if inside). She got blood work every other week and is to the point where she actually will calm teens and adults down now when they need blood work (it doesn't even phase her). She had some tummy ache problems (but she has always had tummy issues) and her hair did not fall out or even really thin out in any noticable amount which was great. She finished it on Sept 18th and we do not regret it (but it did take us months to finally agree to it b/c we were so scared). Today she is going in for her H1N1 vaccine and now I am scared of that. It is always something, but we take it day by day :) Good luck with your decision.

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• By LauraG
• Posted October 27, 2009 at 9:14 pm
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We did cytoxan after our daughter became steroid dependent. Of course we were terrified but in the end it was better than the alternative, spilling while on a full dose of steroids. It worked immediately and the only problem she had with it was ever so slight thinning of the hair. We made sure she drank lots of water (find out exact amt from neph) and that she took it in the morning (it is not supposed to sit in the bladder so always emptied the bladder-we would even take our daughter to the bathroom after she was asleep). We also did weekly labs. It worked while she was on it but she did catch a cold and relapse 3 months after she stopped it. Every decision is tough, good luck:)

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• By lovemykayla
• Posted October 28, 2009 at 12:36 pm
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Thank you all for your replies. Yes it is a very tough decision and I agree it seems too soon for cytoxan. Pred is a awful drug too and they all are as a matter of fact. I have done some research on cytoxan and some other meds and they all have scary side effects. The fact that cytoxan may not work worries me even more. My instincts tell me to wait. And during that time collect as much information as I possibly can. Thank you all so much for sharing.
3+

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• By dink2061
• Posted October 29, 2009 at 11:52 am
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Hey there. I had NS as a child thirty years ago and was one of the first trial recipients of cytoxan. It worked for me and I was attack free for thirty years. I had NS pretty bad, frequent attacks and spent my childhood on steroids. I went on after age 14 (diagnosed at 2) leading a perfectly normal life, getting pregnant no problem and having three great pregnancys. No long term effects other then Im a lil on the shorter side, 5"1. There is lots to hope for and chances are...one of these days..treatment will click and your children will grow to enjoy a "normal" existence. I found NS after a "out of nowhere" attack, 30 years from my last. I know what I am in for and I know though that there is normal life on the horizon. Good luck to you and your children, and keep the faith.

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