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I'm 16 years old, and in November of 2008 i was diagnosed with ne...

Posted at 8: 2 PM on Mar 07, 2009 by ashleyyy, #39702
I'm 16 years old, and in November of 2008 i was diagnosed with nephrotic syndrome, or FSGS. i started taking the preds starting at 60mg, and last month i started weaning off. i'm at 20 mg right now. i noticed that i started getting the common moon face right after i started taking the meds. and i hate it so much. also, i've had so much trouble falling asleep at night, but then when i do, i sleep for so long. i've also had the dreadful hair growth, REALLY bad mood swings, headaches, and for sure, increase in appetite. i've gained 30lbs since ive been on the preds and even when i exercise daily, i still cant loose a single pound. normally im a really fit girl, i ran track and i was a dancer. im just really worried that all this "fat" wont go away. i really hope it does. it just feels like prednisone really ruined my sophomore year of high school. and i just don't feel like doing anything anymore. i just wanna wear swearpants, curl up in a ball and lay in my bed and wait until this nightmare is over. But im just glad to know that there are a lot of other people out there that know how i feel.
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Reply 7 months ago on Apr 26, 2009 by nephroticmom, #19215

Hello, my daughter who just turned 13 in March 09 was just diagnosed with Nephrotic Syndrome too. Drs. had her on 60mg of Pred as well and she was still spilling proten. They put her on other med called Prograf along with Pred. She tested within a few days of taking this med and was in remission.So, now her dose for pred is 4 on/4off for 11 doses. My question is have you ever had leg pain ? She has been having very bad pains in her knees for a few day and didn't know if you had the same.
She too has all the side effects like you. She also was a very fit 7th grader who ran track and now the kids just make fun of her because of her moon face and weight. So, I know just how you feel and as a mother it sucks to have your daughter go through this. Take care and best of luck to you.
nephrotic mom

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