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need a friend with NS!

Posted , 5 users are following.

donnap
donnap

Hi, I d reallly like to have someone to talk to about nephrotic syndrome because for the last 3 years I ve been on and off treatment which is really getting me down! I ve only ever met 1 other person with this disease and that was about 28 years ago so I doubt she d remember me!

I ve just spent 3 weeks taking prednisolone and tacrolimus which was a complete nightmare (couldn t sleep, concentrate, had shakes and just generally felt very hyper) so my doctor reluctantly let me stop taking them. In a fortnight I m due back in clinic and not sure what the next course of treatment will be. Would love to hear from anyone who may have an idea how I m feeling!

Donna x

0 likes, 4 replies

4 Replies

  • Eisusq
    Eisusq

    Posted

    Hi Donna,

    I have recently been diagnosed with Nephrotic Syndrome and would be very happy to chat.

    Are you in the UK?

    Susie

  • wickens
    wickens

    Posted

    Hello,

    I was diagnosed with nephrotic syndrome in September after nearly dying of a heart attack due to blood clots. I think it's probably worth putting up with certain side effects if the drugs are keeping you alive and may possibly give you a cure. I also found that I adjusted to the prednisolone after a few weeks and started to sleep better and became less 'hyper'.

  • rehchandan
    rehchandan donnap

    Posted

    I've had NS since i was 17 monthd old. I am 19 now. and i can see where you are coming from. when i was younger i felt ill all the time. cold, flus, infections, massive swelling that i weighed 130 for a 13 year old. in highwchool i weighed 179, it was a nightmare, b.c i was depressed and fat. i couldnt explain to my teachers or classmates why i was absent all the time. but in december of 2013 i was hospitalised for edema in my lungs. so my doc put me onn 30mgs of prednisone everyother day for 5 years. im down 1 year so thats a good sign and only 2 relapses. where as before i would relapse 3 times a month. i learned to ignore the headaches b.c they are not that bad and b.c i just need sleep. my diet has little to no protein or salt. pretty simple. nothing hard to follow, i take vit C and D. and tacrolimus 6 mgs twice a day. and that doesnt realy affect me as much as steriods. but i never heard of any other treatment for pediatric NS. all i have ever known was NS and i cant wait to out grow it.
  • Amandaten
    Amandaten donnap

    Posted

    Hi Donna,

    I have had NS for the last three years and the only treatment that has worked for me so far is cyphosphamaide. This treamant worked after 3 weeks of an 8 week treatment for me. I am now only taking 2.5mg of steroids and nothing else. I was taking 60mg three years ago and have tried Cyclosporin, mycophenolate nd levamisole but they did not work for me.

    I feel fantastic at the moment and am learing to Tap dance.

    The feeling you are having are so horrid as I get that if I have to take higher doses of steroids.

    Also the swelling and tiredness is just horific and nobody understands.

    Poor baby, I know how you feel.

    So what treaments have you had?

    Amanda xx

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