need a friend with NS!

1. donnap 16 October 2011 at 12:52PM
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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!

   Donna x

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2. Eisusq 23 January 2012 at 12:25PM

   Hi Donna,

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

   Are you in the UK?

   Susie

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3. wickens 18 March 2012 at 14:37PM

   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'.

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