1. Community
  2. Genito-urinary/Kidney
  3. Kidney Problems

Nephrotic Syndrome and Cyclophosphamide

Posted , 6 users are following.

n93394
n93394

My son was diagnosed with Nephrotic Syndrome in June 2016 at the age of 4 and half yrs. He responds to Prednisone but has had frequent relapses since then every time we try to taper his dose of Prednisone. His diagnosis is Steroid Dependent Nephrotic Syndrome (Minimal Change Disease).

Our doctor started Levimasole in November 2016 but that also not seems to be working.

We have been advised to start Cyclophosphamide. I am extremely worried about the efficacy and side effects. Has someone benefitted in long term by taking cyclophosphamide. Please share your experiences. Please guide.

Does this disease gets cured permanently by taking cyclophosphamide.

0 likes, 5 replies

5 Replies

  • katie79250
    katie79250 n93394

    Posted

    My son had cyclophosphamide at about 7 years old ( he is now 13) . It worked wonders for him and stopped him relapsing for about 3 year but then he started again. Since then he has had Tacrolumus for 4 years, he tried mmf but that did not work and just 2 weeks ago had a riximutab.

    I would definitely recommend having it, even though the side effects sound scary! My son was fortunate in that is cause him little effects, especially compared to the other drugs he's taken!

    It is hard to say if the this will cure him but I think it is unlikely. Most children with MCD nephrotic syndrome will grow out of in in teenage/ early adulthood year but I think it would definitely give a few year peace.

    I hope this helped and your son is soon relapse free.

  • Amandaten
    Amandaten n93394

    Posted

    OMG!

    I am so sorry to hear about your Son.

    I too suffered for 5 years and tried most things.

    I then had 8 weeks of Cyclophosphamide and have never looked back as it put me in remission, immediately.

    I have been in remission for two and half years now.

    It so far has worked for me but I'm 52.

    I am back to how I was before NS.

    It's not nice going through this chemo though and made me very tired and felt sick but I would do it again.

    I hope he will be ok soon xx

    Amanda

  • Amandaten
    Amandaten n93394

    Posted

    Hay !

    I have and have been in remission for nearly 3 years now but I'm 52 x

  • sima09495
    sima09495 n93394

    Posted

    I was diagnosed when i was 3 yrs old i also have minimal change and have only responded to prednisonlone. I do remember when i was young i was put on cyclophamide it was a 6weeks course but didnt wrk i am 31 now the relapses have decreased but when i do relapse only presdnisonlone wrks.

  • david24943
    david24943 n93394

    Posted

    Hi my name is david 

    I was diagnosed with nephrotic syndrome in 1971 at 18 months old 

     Cyclophosphamide I took in 1988at 18

    It stopped me relapsing for 12 years 

    To be fair I would have it again but I think tacralimus is a great drug  but you need to speak to your specialist about it 

    I hope all works out 

    Kind regards 

    David 

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.