Primary or Secondary FSGS meds and treatment question

[Riverwhispering]

Just curious why the drugs we have to take are so different from Primary to Secondary FSGS. 

I have Secondary FSGS and take Calcitriol 0.25MCG, Lisinopril 10MG, Iron 65mg, Furosemide 20mg and Vitamin D3 1,000IU once a day,   

[Deanne]

I don't think primary versus secondary makes any difference. It's just that one person might need different meds because our bodies react differently to different meds. My list isn't that different from yours (primary FSGS).

I was on calcitrol for a while, but it wasn't working very well, so my neph changed me to sensipar.
I was on lisinopril for a long, long time, but when my kidney function dropped to around 25%, it caused my creatinine and potassium to rise, so I had to stop taking it.

I'm still on iron, furosemide, and vitamin D3, along with calsitrol, zetia, fish oil, aspirin, tums, and cardura.

[Riverwhispering]

I was under the impression that people with Primary FSGS were on steroids.   It's interesting about the aspirin, I was told to not use it ever again after I was diagnosed with FSGS.   What is Zetia  and Cardura for?  I've not heard of those meds

[Deanne]

Cardura is a blood pressure med. Zetia is for cholesteral. My neph told me to take aspirin because I had a DVT once (blood clot).

I was put on prednisone for a while to try to put my FSGS into remission. I read/heard somewhere that predinsone works for about 30% of patients. It was somewhat successful in that it reduced my protein leak from 10,000 to 3,000/day. I couldn't stay on prednisone. The side effects were devistating and I ended up in the hospital because of them. After that, my neph weaned me off it over the next couple of months. I was probably on it for about 9 months altogether.

[Sluff]

I have primary FSGS and was diagnosed 6 years ago I think.  The first 18 months I was on steroids then my Function was better ever since. They told me to expect dialysis in 5-6 years. Just this month my creatnine level started to crawl upward. We will see in January what the next step is. My assumption will be back on steroids which will mean I won't be able to get my medical card for my Job as a Truckdriver.  Who knows? maybe they have different meds available then they did 6 years ago.

[MooseMom]

I've had fsgs for 20 years, and it has been only since 2004 that I've been really treated.  I guess I have primary fsgs; no one has said anything different, and I have never been treated with steroids.  My neph went down the immunosuppressant route.  I did ask him why he didn't put me on steroids, and he said that the side effects are just too debilitating.  I didn't argue!  I suspect that most nephs just have their personal preferences based on their experience.

[Deanne]

The steroid side effects are debilitating. That's putting it mildly in my case! Within two weeks I could hardly walk (muscle wasting). Someone bumped into me once, not hard, just a slight bump, and I ended up flat on my back, like a turtle. I whopped my head hard on a concrete floor on my way down and I wasn't able to get up again. I should've been checked for a concussion, but I guess I must have a hard head. I had to have the person who bumped into me haul me upright again. I could hardly lift my legs high enough to step up over a curb. I couldn't walk in the mornings because my feet hurt so badly.

I ended up in the hospital with a blood sugar level of 1550. I'm not diabetic. I couldn't see/was going blind from having high blood sugar. When I showed up at the hospital, they were surprised I was still lucid/not in a coma.

It took several months to recover from it all and my knees still don't have as much flexibility as they did before I was on steroids.

If I had to do that again, I'd have to go on disability. I kept working in part because I felt I was safer at work where people could keep an eye on me. I couldn't really function at work. I mostly just sat there and stared into space. I'm glad I had an understanding manager.