I had a biopsy last year and found out I have fsgs. Since then my kidneys have been on a fast track to failure. I was on prednisone for awhile, then switched to cellcept. Anyone else on the fast track?
I had a biopsy last year and found out I have fsgs. Since then my kidneys have been on a fast track to failure. I was on prednisone for awhile, then switched to cellcept. Anyone else on the fast track?
what stage are you in? What types of meds are you on?
I seemed to do the same, although mine GFR seems to go up and down. One time I was a 81 GFR a month later 63 GFR. My neph. continues to say are you getting 8 glasses of water plus everythng thing else I drink I know that I would feel horrible.My neph. put me on cozaar (to conserve my kidney function). But my prim care doc. put me on Levothyroxine. I had my renal biospy Nov. 1st. Since then a steady decline.
Regina-
The Levothyroxine is thyroid medicine and could be or not be, part of your kidney disease.
Ballerina-
What do you consider the 'fast track'? Where were you at diagnosis vs. now? I was at 33 a year ago and now at 26/27-ish and they say I am declining quicker than they expected.
July, 2007--creatinine 1.7; Last week creatinine 4.49
I take Altace 10mg twice daily, Nifedipine ER 90mg once daily, Tekturna 300mg at bedtime, Cardura 4mg at bedtime, Zocor 20mg at bedtime. I also take Lasix 20mg 3 times weekly. I don't have much swelling yet, although my stomach is puffy. (I weigh 265 lbs) I was on Prednisone 20mg starting at 60mg daily (last May-June). My creatinine & protein got better. As the doctor tried to taper my prednisone dose, my numbers increased. So, Cellcept 500mg was started then increased to 1000mg daily. My blood pressure has been hard to control. I have been on Altace all the time; however, I was on diltiazem or cozaar or atenolol at different times to find the best combination for me. My current combination has worked best for my bp. Today it was 130/84. Even with this regimine it can fluctuate. Two days ago it was 160/92. I am at a weight loss facility where meals total <2000mg daily, are low fat, and have no sugar (only fruit for dessert). Because the Cellcept was not working, my doctor d/c'd it on my last visit 3 weeks ago. I visited kidney centers 2 weeks ago, and we are headed down the dialysis road. My PCP and neph say that I'm atypical--this has happened so fast.
Ballerina-
Sorry to hear how quickly your creat. has risen and it sounds kind of like how Riverdude's situation was. Have they sad exactly when you will have to go on dialysis? What about a transplant- are they getting you set up for that?
I saw yet another neph a few weeks back and he is quite sure that I have had my disease since I was pretty young. It was noticed that I had protein in my urine and had severely high lipids at age 17, so he says that it probably started much earlier. I asked him about the fast and slow progressing FSGS and he said that I had the slow, because it has taken at least 21+ years to get to stage 4.
If we can help you with anything, please don't hesitate to ask!
Thanks for your reply. No date yet for dialysis; however, I'm sure I'll know more on my next appointment. My assignment was to visit kidney centers to familiarize myself with the ones in my area. I've done that. My company switched insurance companies on July 1. My doctor is setting up everything necessary with my new insurance company. And, yes, I will be put on a transplant list. I'm dealing with this right now a little better that I thought I would. My faith in God keeps me centered. I don't have a lot of symptoms. A little queeziness and a little ankle swelling every now and then. I thank God for the health I have and know that He will see me through no matter what. Things could always be worse: there could be no such thing as dialysis. I am grateful, also, for this website.
Hello Ballerina 08,
My daughter was too on the "fast track" . She initially did not respond to anything, but we just keep trying all different meds. Last year we combined cyclosporine and cellcept to stop the downward spiral, we added Linsinopril (a BP med that helps decrease protein leakage). It slowed the progression and her GFR improved. We had to eventually remove the cellcept. She continues a downward trend but a lot more slowly.
I noticed your diet said no sugar, but what about the salt content. That is actually more important when it comes to BP. When my daughter's BP was really high and she was holding onto a lot of fluid after coming of prednisone, she was on 1000mg of sodium a day. Now she is less swollen and only spilling +1protein daily so she is on a 2000mg sodium diet. I gave her Lemon water to help pull off the fluids. It worked well.
She now can only have the lemon water occasionally (chemistry is out of whack because kidneys not filtering as well)
Don't give up! Keep your great positive attitude!
I would do research and come to the doctors appointment with a list of all the meds I found. We would discuss them and laid out an aggressive plan of attack. The disease my still be there but the progression has slowed, allowing us some more dialysis free time!! Good luck and God Bless you!
Thank you, Reneaorr!
I'm am positive most of the time since I don't have too many symptoms. I'm on 1700-2000 mg of sodium right now. I forget why my doctor isn't trying the cyclosporine for me. There is a reason. I'll ask about it again on my next appointment. The Altace is also an ace inhibitor and I'm maxed out on that at 20mg per day. I appreciate your answer and the encouragement! Go bless you and your daughter!
Ballerina08
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