cytoxin/cyclosphosphamide and protein leak

Hi there. My 4 year old son responds to steroids but after 2 years of frequently relapsing he is also considered steroid dependent. One week ago we started cytoxin/cyclosphosphamide after going into remission following a recent relapse (also tapering off prednisone). Unfortunately, after great intervention he still managed to get his brothers bad cold. He started off with a fever(is gone now) and is still really congested. Apart from his cold symptoms, his protein levels range between 1+ and 2+. My concern is, being on this new med i thought he would remain negative. I guess my question is, is it ok for his protein to fluctuate in the early stages of taking this new med? Is this a sign of it not working or is it too early to say its only been a week, and we should give it time? Has anyone with a child who has/had ster. dep. nephrotic syndrome used this med and remain in remission for sometime after treatment? Does anyone have/had any experience with this medicine or have any insights to this, that they can share? Any help, any insights will be greatly appreciated. Feeling a little disheartened, as was expecting more from this drug and was very disappointed not see a neg reading.

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Gosh, don't even begin to worry or be disappointed yet, it has only been 1 week! give it time, I'm sure he will respond and go into remission, most everyone does.

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i am not a child, but i started on cytoxin when my protein level was at 35. cytoxin took it down to 25, then 19, then 8, and it is presently at about 3. i have been taking it for 1 full year and must say i am pleased with the results. I wish you much luck and patience.

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Thank you for your quick replies. I guess I was upset and didn't rationalize that it has only been a week and like many things it does probably take time. Your replies helped clarify that in my mind and are really appreciated. I am definitely feeling a little better. If there is anyone whose child has taken it and would like to share their experience it will be a great help as well. I know everyone and every case is different but it helps to know how other children have managed with this drug in terms of side effects and effectiveness

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Squid,
On a different topic, what is your neph's views on taking Cytoxan for over a year?

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My daughter is at a similar point now. She's 4, steroid-dependent/frequent relapser and will have to start Cytoxin the next time she relapses. I thought we were there this week when she relapsed after a bad cold and fever. On Friday I decided to wait on calling the neph until after this weekend because she's feeling better and I wanted to see what happened to her levels. Sure enough after 4 days at 3+ she went down to 2+ yesterday and trace today. She's only on 5 mg pred every other day so her levels were elevated due to her cold alone and got better about 5 days after her last fever episode. I've read that even people without kidney problems can get to 1+ or 2+ when they are sick. I think you should wait a few days and make sure these levels aren't just triggered by the cold. Good luck. I am so nervous about my little girl starting this med in the near future. Did your son's doc address the possible infertility side effect? I just wonder how likely (or unlikely) that is.

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eyedocjv,
Starting this medicine was definitely difficult. Before starting the medicine we did have an appointment just to go over it. The two nephrologists there (one was senior nephrologist) seemed to be very casual about the whole thing. They said they use this medicine a lot with steroid dependent/frequent relapsing children. As for side of effects such as infertility is not a permanent side effect at this age. Meaning when used in the early years and the dosing they use for children with nephrotic syndrome, as well as duration (8 to 12 weeks no longer) does not cause permanent fertility side effects. However risk increases when used in teenage years or later.
The side effects that really concerns me is the "slight increase of risk" in developing certain types of cancers, again they did mention that with this dose and duration its not a big concern. The only comfort is that if the risk was so great it would not be prescribed so frequently. Regardless, it is very painful to give him such a toxic medication every morning and without getting that sick feeling in the pit of your stomach. The one thing that makes it easier is hoping and praying that after taking this medicine he will have a long remission. When was your daughter diagnosed? How often does she relapse? My son had 5 relapses the first year and only 3 last but relapses shortly after being off prednisone.

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My son is also steriod dependant, and took cytoxan. His remission lasted only 3 months- after getting a fever. My son wasn't able to be off steriods at all without relapsing, but with the cytoxan, he was finally able to. We were praying for a longer remission, but there are no guarantees with any of these drugs. Our neph also stresses to us that all kids repond differently to these meds, so what works for one may not work at all for another. Good luck with your son :)

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cmwill77

Thank you for your reply. Did your son some have and protein fluctuation while on cytosine? Does he now have relapse less frequently then before taking cytoxin?

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When he started, yes there was a few days that fluctuated, but then he was always trace. His remission- completely med free, unfortunately, only lasted 3 months. But I know someone else whose remission lasted a year after taking the cytoxan. Our neph says that kids who have taken cytoxan respond better to just the pred after. So we are praying :)

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sorry, i misspoke. i have 1 more month for a complete year and then i will be coming off of the cytoxan. sure has felt like a year though.

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