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nephrotic syndrome mcd

Posted , 3 users are following.

nimrod47134
nimrod47134

Does anyone here have nephrotic syndrome mcd and he is after 21 years old? and would like to talk about it?

about things like what kind of medicines? treatments? about life with the disease? everything about that..

1 like, 5 replies

5 Replies

  • nimrod47134
    nimrod47134

    Posted

    forgot to tell taht i have mcd...
  • dimarie
    dimarie nimrod47134

    Posted

    Hi, I was diagnosed with mcd and nephrotic syndrome 2 years ago.  It did no take long for the doctors learn that I also have FSGS.  The treatment is tough...it took a good 1 and a half years to get it under control. Hang in there!  Surround yourself with friends/family.  I am finally in a partial remission and feel like my self again (which I thought would never happen). Be very careful with the prednisone. Prayers help a ton!
  • dimarie
    dimarie nimrod47134

    Posted

    An organization called Nephcure is outstanding.  I found it early on and since then both my husband and I have become very involved.  The resources are incredible.    Ask me any questions, the treatment is hell and and made me feel embarrassed.  The prednisone can cause major damage, I had to have one hip replaced, pending the other.  Talk to your neph about that one...
    • nimrod47134
      nimrod47134 dimarie

      Posted

      Thanks dimarie! appreciate your support!

      I'm dealing with n-s-mcd since i was 2 years old (for 27 years).. I dont take prednisone anymore cuse i'm steroid-resistance, Today i treated with cyclosporine and for 4 months found in remission.

      Everyone says cyclosporine doesn't have side effects, i dont think so.

      I'd love to know if anyone else think like me...??

      looking for alternative treatments,

  • dimarie
    dimarie nimrod47134

    Posted

    I had terrible side effects with Cyclosporine, Tacrolimas was great for me.
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