Hey there to all my fellow neurotic nephrotic parents. I have a question. My daughter, Emma, was diagnosed with MCNS in January 2008. Since then she has become steriod dependant. She goes 30-35 days in remission and then relapses for 7-10 days then 30-35 days in remission and then relapses for 7-10 day....and so on. She has been on prednisolone all this time and always responds quickly BUT cannnot seem to get completely weaned off. She never has any swelling or anything while she is relapsing. You would never know she is actually relapsing unless you test her pee. We took her back to our neph yesterday and he has now decided to put her on Cytoxan. Her blood test results, he said, look great. Her albumin level is a 4 and her creatine levels are perfect so he sees no problem with her physically she just can't seem to get off the steriod. My question is.......side effects. He went through the laundry list of side effects but followed them all up with........."at the small dose she will be on we have not seen any significant side effects". Is that true? Has anyone had their child on this mediciation and if so.....what were the REAL side effects. I am looking forward to her not having the "moon face" and the strange displacement of fat on her body from the steriod but I am sceptical that there are NO side effects. I mean don't get me wrong......if ther aren't.....that is AWESOME!!! I just need a little support from my fellow moms and dads who have been fighting this battle as well. Also, what has been the sucess rate with using this medication in relation to remission. Have your children experienced long term remission by using this medication? My neph said that in about 80-85% of kids they are able to get long term (months or even years) of remission by using this medicine. Let me know about your experiences.........Thanks!!!!
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Cytoxan
- By kbarber2007
- Posted October 29, 2008 at 4:02 pm · 5 replies
- In Children with nephrotic syndrome
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- By mattsmom
- Posted November 8, 2008 at 8:26 am
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make sure you ask the doc about sterility issues on cytoxan! my son was on it and we made sure to bank his sperm for the future... unfortunately, cytoxan didn't work for our son and ultimately needed a transplant but def something to think about?
mattsmom
- By maaxiim
- Posted November 9, 2008 at 9:21 am
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You should also be aware that it can cause cystitis(sp?) and bladder infections and you really need to keep flushing your system by drinking a lot of water. Personally, it caused a lot of UT discomfort for me, long term.
- By LauraG
- Posted November 10, 2008 at 4:55 pm
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Our now 5 year old daughter was diagnosed in April 2008 with MCD (no biopsy yet) and she became steroid dependent, then resistant and toxic so we started Cytoxan in September and she immediately went into remission. We are 8 weeks into the treatment and have no side effects thus far. We were very hesitant and nervous about Cytoxan but once it started working we felt thankful. I know this doesn't help with the long term prognosis/effects... If your daughter does take it be sure she drinks the appropriate amount of water for her weight and that she takes the Cytoxan in the morning (so she can then flush her system all day) and that she constantly goes to the bathroom. I also read somewhere that it is helpful to drink a full glass of water before you take the pill. I hope you have the same hopeful experience with Cytoxan that we have had. And I hope both of our girls achieve long term remission!!!!!!
- By kbarber2007
- Posted November 13, 2008 at 1:57 pm
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Thanks for your responses!!! I really appreciate all of the support. The water issue we have been trying to stay on top of. Emma is not a huge fan of water but we have been doing our best to pump her full of as much as possible. We went for our first weekly blood test on Tuesday of this week and I spoke to her neph yesterday and he said that her blood work looks great and that her white cell count is good....so that is a blessing. We have just started the second week of weaning her off the pred so we will know in the next couple of days based on whether she relapses or not whether the cytoxan is working. Unfortunatly, Emma is now showing signs of getting a cold.......most inconvenient time possible....but her neph didn't sound too worried as long as she isn't running a fever or has a persistent cough. Thanks again for all of your responses and I will keep you and your children in my prayers !!!!
Laura G, what do you mean by your daughter became toxic?? What are the indications of that??
- By LauraG
- Posted November 14, 2008 at 11:13 am
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My daughter got steroid toxicity at the end of August. That meant that she looked even more swollen than usual-the doctor called it cushingoid. Also, her blood sugars were high. The steroids were interfering with her ability to process sugars. And she had stopped growing. Up until that point, the only side effects from the steroids had been the weight gain and the mood swings. But once the steroids started causing high blood sugars and stopped her growth we knew we had to take another med just to get her off the steroids. (Plus the fact that the steroids were no longer putting her in remission).
And our daughter also got a cold a week after we started the cytoxan and we just stopped the steroid taper and kept it at the then current dosage until she stopped spilling protein...then we resumed the taper-so it wasn't too bad other than the cold slowed down our taper.
Lastly, when I last posted I told you I hadn't seen any side effects from the cytoxan. Now I have noticed that I see some hair on her pillow and a little more in the bath...so it seems like she is having some hair loss, but it isn't noticeable when looking at her. And we only have 3 1/2 weeks left so I don't think it will be a problem.
Keep me posted on how the cytoxan is working.
:)Laura
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