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!