How many of you have that have had FSGS have had an increase in function. My husband went from 22% in 2005 and currently is at 68%. He takes supplements (BP and cholestol meds) that he thinks is helping to repair the damage and keep his immune system in order. I hope so. I am curious how many of you have had an increase in function during any remissions you have had.
Thanks
Linda
I was acute renal failure in June 07 and scheduled for dialysis. I responded to treatment and am in full remission. My neph told me in March my kidneys are functioning 100%. No swelling. Diet and meds seem to be working fine for now.
You just made my day! My daughter has FSGS. She started 21/2 years ago, went on a lot of meds but went into remission after 6 months. I keep praying that she gets better. The Doctors don't know alot about FSGS so hearing about your husband is great.
Sharon
Boussar that is great news!!! I hope you have a lifetime of remission it gives us all hope. I didn't think 100% was even possible if there was some kind of damage (scarring) to the kidney.
This is such a funky disease. The only downfall was that he had to have his hip replaced in May 06 because of steroids and kidney disease. It causes a bone disease called Avascular Necrosis. We go today to have his other hip looked at because we think it is progressing. I haven't heard many people on this board talk about this side effect (AVN). It is a very debilitating thing to go through. He is only 44 and has had to have one hip done, all because of FSGS. I don't know if any of your Dr's ever told any of you, but we were never told about this, only that steroids can cause osteroposis. AVN is caused by steroids, gout, kidney disease, lupus.
Be Well everyone
Linda
Linda, I didn't know 100% was possible either but that is what he told me. He said my blood and unrine test were 100% normal in March. He said he did not expect me to be so far along so quickly. I take Phoslo and Citricol, sodium bicarb, 10 mg of prednisone and 250 mg of cellcept but no fluid meds and have no swelling. My kidneys shut down in June and my protein and creatin levels were so bad, I was suppose to go on dialysis on 7/3/07. That was the day I was released from the hospital. My hemoglobin crashed and I had to have a blood transfusion. I was also given a low dose of chemo which is the same thing given to cancer patients. At that time, the results of my biopsy had not come back and the neph though I had two really bad things going on but it turns out I only had FSGS but I was in such bad shape, they went ahead and gave me the chemo. I wonder if that made the difference. I asked the neph and he just smiled and said in my case, there was some divine intervention. I think so too. I really believe in prayer and I know a lot of people were praying for me. I called everyone I knew who I thought was in good standing with our Lord and asked them to put me on their prayer list.
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