MCNS w/mesangial proliferation + steroid dependent

By duker
Posted March 29, 2008 at 11:31 am · 4 replies
In Children with nephrotic syndrome

Hi, does anyone have this diagnosis?

my daughter (6) has been battling this since age 2.5 and we are always against a brick wall. she does not respond to meds that others do. right now we are on 14 meds a day - incl prednisone(9mg 2x/day) cell cept (200mg 2x/day) AND prograf (1.5mg 2x/day).

tremendous side effects including red hot cheeks (constant pain), severe osteoporosis... all pointing to toxicity of the steroids. the next step if cellcept does not work is a black box drug called rituximab .....and then double nephrectomy and PD....

just wondering if anyone has gone down this particular road before (with the same diag and meds...)
thanks

4 replies

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By MariekeV
Posted March 30, 2008 at 4:30 am

Hi,

Must be awful. I know a lot of people that have all kind of cocktails...with heavy stuff. Is she taking Bloodpressure med?

By duker
Posted March 30, 2008 at 8:42 am

yes, she has been on 2.5 mg of enalipril for 3 yrs. but I think that needs to be adjusted b/c her blood pressure seems a bit high. she is also on vitamin d, magnesium (for her cheek pain), prevacid, and claritin (for her cheek - just an out of the box thinking to see if a h1 blocker could help).

I cant seem to find anyone with her exact situation though. afraid of the next step b/c rituximab has caused instant death.

By duker
Posted March 30, 2008 at 8:54 am

Hi mariekeV,

on another blog I saw you mentioned a trial in Holland re:levamisole - do you have any more information or where I could start my investigation? I really need to exhaust every possibility to save my babies kidneys.

thanks so much for your help!

By nlsabrina
Posted April 2, 2008 at 1:54 pm

hello

my son was also on prednislon and cellcept
the most side effects were from the prednisilon
the next step if cell cept dont work is the neoral it is a bit stronger than the cell cept
we have used the neoral first but he has to many side effect of this medicine
they are doing test in holland whith the medicine lavimisol in other country's they use this medicine for nefothic syndrome
i hope the test will be positive so we can use it also

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