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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!
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I have recently been diagnosed with Nephrotic Syndrome and would be very happy to chat.
Are you in the UK?
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'.
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?
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