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.
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
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.
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
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.