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Discussions
Diet with FSGS
- By jyakubov · Posted 5:34 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 ...
Prednisone taper and joint pain
- By TxSaphyre · Posted yesterday at 1:13 pm
- In Adults with nephrotic syndrome · 4 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 ...
SPILLING QUESTION
- By BABYWITHFSGS · Posted yesterday at 9:19 am
- 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 ...
secondary FSGS
- By lookonthebrightside · Posted November 17, 2009
- In Adults with FSGS · 6 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 ...
What if we get Swine Flu?
- By MooseMom · Posted November 17, 2009
- 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 ...
Your Disease...
- By acain0022 · Posted November 16, 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 ...
Heading Towards Transplant Road
- By kalebsmommy · Posted November 14, 2009
- 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 ...
Help the Albumin Levels are not higher!
- By SoaringHigh · Posted November 13, 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 ...
Advice please!
- By SHARONIRELAND · Posted November 13, 2009
- In Children with FSGS · 3 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 ...
Pregnancy...
- By acain0022 · Posted November 12, 2009
- In Adults with nephrotic syndrome · 2 replies
- My doctor told me since I have been on prednisone for so long. (On and off for every relapse since 18 months old.) That it would be hard or I may not be able to have children. Does anyone know anything ...
Positive Swine flu
- By BABYWITHFSGS · Posted November 12, 2009
- In Children with FSGS · 9 replies
- My son was exposed to the swine flu about a week ago so we started him on tamiflu as a percaution he got the H1N1 shot on monday. This morning he woke up not himself kind of cranky. I took him to the ...
LEG PAIN
- By Tyree · Posted November 12, 2009
- In Adults with FSGS · 3 replies
- I having been having leg pain for over a year now and my docs don't think that it is realted to my FSGS. Does anyone else have leg pain? If so what have the said it was and how is it getting treated ...
Tapering
- By shawny816 · Posted November 12, 2009
- In Children with nephrotic syndrome · 11 replies
- I started tapering my 3year old sons Prednisone from 30 mg every day to 20mg every other day for about a week. He fell asleep really early and slept 12 hours when he woke up in the morning i tested his ...
Cyclosporine...
- By acain0022 · Posted November 11, 2009
- In Adults with nephrotic syndrome · 10 replies
- I became ill with ns when I was 18 months old, was on prednisone treatments since. Now 22 and a new relapse my doctor is trying cyclosporine with me, he put me on prednisone and cyclosporine at same time ...
Sore throats??
- By acain0022 · Posted November 11, 2009
- In Adults with nephrotic syndrome · 5 replies
- I have talked to one other person with this disease and she has agree with me that she gets sore throats all of the time. I was wondering if anyone else does?? And if you know where it comes from?? I ...
Minimal Change -
- By SusanKidneyQueen · Posted November 11, 2009
- In Adults with nephrotic syndrome · 2 replies
- Hi, I'm not getting any results from the prendisolone yet. It's been 10 days on 62.5mg. It's the first relapse I've had (the first time It went away in a week). Does it just go all of a sudden.? I just ...
NephCure Walks in So. Cal. this weekend!
- By CatherineL · Posted November 11, 2009
- In Fundraise for NephCure · 0 replies
- We hope everyone will join us for the NephCure Walks in Santa Monica and Fountain Valley this weekend. It's not too late to join us! Email me at clepone@nephcure.org for more information. Thank you to ...
confused
- By tiffany198524 · Posted November 11, 2009
- In Children with nephrotic syndrome · 2 replies
- well my son He has a real sever case of minimal change disease nephrotic disease but on the treatment he is on he is just getting worse the relasp last longer and get worse his dose os prednizon and water ...
Phosphorus binders
- By MooseMom · Posted November 10, 2009
- 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 ...
Tell me about your neph
- By MooseMom · Posted November 10, 2009
- 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 ...
Events and resources
