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Cytoxan Remission!!

SHARONIRELAND
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Adam was put ona 12 week course of cytoxan(cyclophosphamide) 5 weeks ago as he was no longer responding to prograf and we couldnt get him off the high dose steriods.
He was in "remission" for the past 6weeks but once the steriod is being reduced he is relapsing again..

Is this an indication that the cytoxan now isnt working??we are distraught as we had thought this woould be the miracle that would get him into long term remission...i cant bare to think that i am now putting such a potent drug into him if it isnt working..

Has anyone else had a relapse while on cytoxan?? Does it mean that this isnt working or might it take another few days/weeks to respond..I dont know what we will do now.

Explore topics in this discussion:

Cytoxan Cyclophosphamide

3 replies

lovemykayla

My daughter was diagnosed in July with MCD and her neph is pushing us to give the cytoxan. I am extremely worried as well with giving her that drug. And the fact that it may not work. Can I ask you how your son did through the 12 week process? And how long was he on pred before they urged the cytoxan? Sorry I am full of questions and have no advice.
3+

SHARONIRELAND

Adam is going into his 6th week on the cyclo, and it has had no apparent side effects whatsoever, if it had worked it would have been a great drug..his hair has thinned so slightly that nobody but me would notice. ANYTHING is better than steriods.....
He has been on steriods for 2 years and has only ever come off them for 2weeks last year..he just cant get off them, we tried prograf for a year and it worked for 3 months, he is still totally steriod dependent...

right now he is in another relapse, but is feeling really good..
He has elevated ALT levels above the normal range so we are concerned about this, we think it might have somthing to do with the cyclophosphamide!!!!
I am worried now as i feel we are running out of opitions really quickly..

dink2061

I was a recipient of the cytoxan treatment for NS over 30 years ago. A few treatments with it and I went into remission for 30 years with NO SIDE EFFECTS!! Okay, Im a lil on the petite side (5'1). I went on to get pregnant 3 times no problem, great pregnancies and great deliviries. I have had a wonderful NORMAL life for many, many years after cytoxin and I was one of the first children to be "experimented" with it. Have faith. Please, have faith. I have recently had a new occurence of NS after all these years. Yes, its crappy, but please, I found this forum and I think it is so important for parents to try their best to trust certain things. I am so thankful my parents let me be the guinea pig I was so many years ago so kids now can be given the oppurtunity at a normal existance.

Life goes on with, during and AFTER NS.

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