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My daughter has hadnephrotic syndrome for 3 years andkeeps relapsing

Posted , 9 users are following.

jade49756
jade49756

My daughter got diagnosed with nephrotic syndrome 3years ago in March, she I now 10 years old. She has relapsed more than 5 times now and had been on prednisone for 2years without a break and still comes back, she also takes mycrophenolate (mmf) the dosage of this was increased to try get off the steroids and it helped for a little while! She still currently takes both mmf and prednisone and it has still come back. Now being told she has to go back on a high dose of steroids to stop the leak, but I'm not happy that this is happening again and wondering if anybody has or is going through the same thing? Or has anybody had another medication that has helped keep nephrotic syndrome away??

0 likes, 7 replies

7 Replies

  • Amandaten
    Amandaten jade49756

    Posted

    Hi, cyclophosphamide is the only thing that put me in remission for over a year now .

    Hope that helps. I have gradually weaned myself off steroids and all drugs over the last 6 months and I am still in remission. I am 51 but had suffered for 3.5 years.

    How old is your Daughter?

  • rhona85440
    rhona85440 jade49756

    Posted

    We are in a similar position. My boy is nearly 5. It has been a year since he was diagnosed but he has had 5 relapses now. We have tried Cyclophosphamide and now Ciclosporin but they don't seem to be doing the job. Not managed to get off steroids since diagnosis. Think we are now going for a kidney biopsy.
  • eric31962
    eric31962 jade49756

    Posted

    Sorry , in the same position, G.P. tells me that children often go into remission.

    But not so for adults . I've had this condition for several years.

    I dearly wish I could give you a solution, but cannot find one for my own self.

                                    Regards, E

  • jemj3ms
    jemj3ms jade49756

    Posted

    Hello, my little boy was diagnosed with this in July 2014 and has been having relapses ever since. He has recently been put on levamisole, which he has to take every other day for up to 6 months. So far it has stopped the relapses and he has been steroid free now for nearly 5 weeks which is brilliant for him
  • gjorgji77696
    gjorgji77696 jade49756

    Posted

    My daughter was diagnosed NFS two years ago (she was four back then) and put on high dose of steroids then relapsed few times and slowly become steroid resistant. Then a german professor suggested to introduce cyclosporine and slooowly tapper the steroids which worked out. Then we continued to take the cyclosporine only in the course of two years now successfully and relapsing only under major cold which is normal. With normal physical activity and light diet on salt it worked so far. Monthly checks on urine and blood are still a practice. Hope this helps.
  • Worky
    Worky jade49756

    Posted

    I had NS at around 8 years old. I kept relapsing while taking prednisone every time I got sick. Switched doctors after 8 years of relapsing on Prednisone. New doctor prescribed cyclosporine, cleared me up. I have been clear of NS for almost 20 years but I have high blood pressure from all the years of prednisone and have to take blood pressurre medicine. I'm still alive and feel great, hope this helps smile

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