FSGS- retuximab help

hi, my name is Sophie and i have known about my FSGS since the day after my 17th birthday. I'm now 18 but only just and if im honest im fed up of my kidneys not working. i have been on prdnisolone and that failed then i started on the immuno supressant tacrolimus which did more damage than good. I am now being put on retuximab injections and was wondering if anyone knows about it and how succesfull it is. I've trawled the internet and found nothing for its use on primary FSGS. Its really starting to get me down now and with school its all just a little bit too much. Any help would be appreciated so much. Thank you!!

[doubleaaaron]

I have fsgs. retuximab  Is a immunosuppresive drug. And yes its used in people with kidney diseases. It can help aid in restoring some kidney function. Since fsgs is scarring of the kidneys I don't understand why they would give that to you? Scarring can't be reversed. Maybe they are just trying anything they can to help you feel better.

[sophiehuk412]

my doc says its a newish thing. It's to try and slow it down as nothing else has worked. You dont sound convinced haha. Thank you though

[doubleaaaron]

no its not that im convinced or not. I am happy to see them trying something they usually don't go with. Thats a good sign that at least the doc is trying everything he can. I like that.

[sophiehuk412]

thank you :) Fingers crossed it works. When I first was diagnosed I was a little naive in thinking it would be treated straight away. Maybe this will give a little hope to others who's Fsgs isn't quick to behave haha

[specialk136]

Hi Sophie I have been diagnosed with fsgs for about 3 years, I am 34 now.  It is a really difficult thing to deal with especially when you were fine one day and then all of a sudden you are swelling and losing lots, and lots of protein.  I am really trying to keep the faith but at times it can get to you, sometime you feel like what next, what else to expect will I be able to see my kids grow up.  My biggest thing right now besides the meds. is the swelling , gaining weight, not being able to wear whatever shoes I want, sometime shedding of my hair and constantly being tired, I am just so worn out all the time, no matter what I do.  I really would like to just be normal again, not being sick or having to deal with all of this.