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Active discussions
secondary FSGS
- By lookonthebrightside · New reply yesterday at 11:32 pm
- In Adults with FSGS · 8 replies
- Hi, I was just diagnosed today with secondary FSGA. My doctor made it seem like i was lucky i was diagnosed with this and not something else. I have spent the day researching online and i am seeing that ...
Prednisone taper and joint pain
- By TxSaphyre · New reply yesterday at 10:34 pm
- In Adults with nephrotic syndrome · 6 replies
- I have read many posts on joint pain in this forum but I didn't find any that really "hit the spot" so to speak. I was on 80 MG of pred every other day for 6 months. My neph scheduled my taper as follows ...
Advice please!
- By SHARONIRELAND · New reply yesterday at 9:29 pm
- In Children with FSGS · 4 replies
- Can any please advise me on what will happen next! My son is going into his 8th week of cyclophosphamide treatment, he relapsed 2 weeks ago and thankfully today is his 3rd day negative. He was on prograf ...
Diet with FSGS
- By jyakubov · New reply yesterday at 7:09 pm
- In Adults with FSGS · 3 replies
- I am new member to this site-- I just recently got diagnosed with FSGS about a month ago. I have not yet started treatment (specifically prednisone) because I want to get 2nd and 3rd opinion from other ...
The Time before Dialysis/Transplant
- By smile213 · New reply yesterday at 6:07 pm
- In Adults with FSGS · 29 replies
- I would like to ask about experiences with the period of time right before dialysis/transplant is necessary. How was it decided that it was time for this? Were there physical signs? How high was your ...
how long on cyclosporine when it does not work anymore? than what????
Heading Towards Transplant Road
- By kalebsmommy · New reply yesterday at 2:57 pm
- In Children with FSGS · 5 replies
- My son was diagnosed with FSGS this summer. His kidneys showed 50% scarring. They took him off of prednisone and put him on cyclosporine, but that was ineffective. A month ago he was given a peritoneal ...
Phosphorus binders
- By MooseMom · New reply yesterday at 1:17 pm
- In Adults with FSGS · 3 replies
- Does anyone here take phosphorus binders? My mother is on dialysis (doesn't have CKD, but instead has no renal function because of unrelated surgery), and she has to take them, and she just does not get ...
What if we get Swine Flu?
- By MooseMom · New reply yesterday at 1:08 pm
- In Adults with FSGS · 5 replies
- Ok, so we all have an underlying medical condition, and I am assuming that at least most of us are immunosuppressed, meaning that we need the H1N1 vaccine, right? I volunteer at our local hospital, just ...
Tell me about your neph
- By MooseMom · New reply yesterday at 10:30 am
- In Adults with FSGS · 18 replies
- I'm just curious... We're all in this for the long haul. Our nephs (and their usually unlauded assistants) become very important people in our lives and will probably remain so for a long time, if not ...
Having a very very bad day!
- By SpenciesMom · New reply yesterday at 9:53 am
- In Children with nephrotic syndrome · 18 replies
- I am just so tired of all this NS stuff. Why can't my son be NS free? This is so unfair. My son was diagnosed with nephrotic syndrome in November of 2007. He has been on steroids since then. Currently ...
Help
- By littleflowercure · New reply November 19, 2009
- In Adults with nephrotic syndrome · 2 replies
- My father is in ICU right now. He is stuck in a continous afib loop, Dialysis, edema, olcers, he is type A positive, it came on suddenly, He is on predisone, lasix, sorry my spelling stinks. I feel like ...
What does remission really mean?
- By SoaringHigh · New reply November 19, 2009
- In Children with FSGS · 7 replies
- I know this may seem elementary but I am just not getting it. I guess our recent understanding is that if the kidney tissue is scarred (FSGS), it is permanent and can't be reversed. If the damage can't ...
SPILLING QUESTION
- By BABYWITHFSGS · New reply November 19, 2009
- In Children with FSGS · 3 replies
- My son is spilling 3+ but he has no swelling! He just got over a relapse about 2 months ago at that time still had no swelling! What does that mean is he still in a somewhat of a remission? In the past ...
Membranous Nephropathy are my results
- By Alfonso123 · New reply November 19, 2009
- In Adults with nephrotic syndrome · 12 replies
- I got the results of my biopsy, the Neph says membranous nephropathy, but the report says membranous glomerulopathy?? Looks like I have less than 10% scaring. I was told about 1/3 of cases go into remission ...
Help the Albumin Levels are not higher!
- By SoaringHigh · New reply November 19, 2009
- In Children with FSGS · 10 replies
- My son 13, has new diagnosis of fSGS and has been on prograf and 2 blood pressure meds for 4 weeks now. We are tapering his Prednisone down where he only has 3 doses left. His blood work from this week ...
Your Disease...
- By acain0022 · New reply November 19, 2009
- In Adults with nephrotic syndrome · 4 replies
- How old were you when you were diagnosed? What disease do you have? How many years have you had it? What drugs are you on or have been on ...
Pregbancy with FSGS
- By louann1982 · New reply November 18, 2009
- In Adults with FSGS · 8 replies
- Hi im 28 years old with FSGS, under the care of a specialised nephrologist. Hes advised against pregnancy until total remission is reached. Can anyone share with me their experiences or cases. Thanks ...
Prograf side effects
- By ChrisandMom · New reply November 18, 2009
- In Children with nephrotic syndrome · 12 replies
- I know there are numerous threads touching on the subject but I was hoping for something more specific, so here goes. After 3+ years on Cellcept with at least 5 relapses, they have decided to change him ...
Flu Shot Experience
- By GinnyO · New reply November 18, 2009
- In Adults with FSGS · 7 replies
- I wanted to comment on my recent experience while getting a flu shot. I got my shot at the Minute Clinic at our local CVS. For the first time in my life I was asked if I agree to take a shot with a preservative ...
Events and resources
