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Ciclosporine for Nephrotic Syndrome

Posted , 4 users are following.

rhona85440
rhona85440

My son is 4 and was diagnosed at the start of the year. He has never been able to get off Prednisolone due to relapses. We tried Cyclophosphamide which didn't work and we are now about to try Ciclosporine. It will be a 0.6 ml dose twice a day. If anyone has any experience of this drug I would really like to hear your experience. 

Thank you in advance. 

1 like, 3 replies

3 Replies

  • eric31962
    eric31962 rhona85440

    Posted

    I'm sorry to say there is little I can say, I'm an adult sufferer . I was talking to my G.P. a few weeks ago and she said, most children grow out of it . Hope this is so in your son's case.  Adults, she said, don't fare so well.

                                    Regards and sympathies, E.

    • rhona85440
      rhona85440 eric31962

      Posted

      Thank you, I hope so. Good luck with your treatment too. 

       

  • gjorgji77696
    gjorgji77696 rhona85440

    Posted

    Hi Rhona, my daugter developed NFS two years ago when she was four. We were immediately hospitalized and she was treated with steroids which after some time prooved inefficient. Then we moved to Germany and got a new nephrologist in Hamburg who immediatelly took her off steroids and put her on Sandimune or cyclosporine. With ups and downs she is now in remission with decreasing the dose slowly. So 0.6 is not a high dose and you shall be accurate with timing of applying it on a daily basis as prescribed. Be watchfull on salt and sweets. Avoid direct sun and keep eye on infections. Each cold can make protenuria comes back but I was told that is rather normal even with healthy individuals. On side-effects in our case except some mustage and hyperplasia there is not much going on hopefully. Moonface effect fades away slowly when your son is off steroids. Edema as well. We apply a waterpill once a month just to take out excessive fluids. In summary cyclosporine is effective replacement for steroids in our case with less side effects. Even if you keep the dosage with years it is maybe better then relapsing and going back to steroids. Keep in mind that your son weight will increase

    so effectivelly the gross dosage will be taken for a higher nr. Of kilograms which per kilo means you are decreasing the dose.....hope this help.

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