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New
Diet with FSGS
- By jyakubov · Posted 5:34 pm
- Discussion 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
- Discussion 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
- Discussion 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
- Discussion 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
- Discussion 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 ...
Still waiting
- By T-rae · Posted November 17, 2009
- Journal · 2 replies
- I am still so swollen and I am b ack on 60mg of of pred. and 80 twice a day of lasix, but nothing is happening. I can't sleep now due to the pred! I had to go to the hospital on Saturday because I was ...
Cinderella Emmy
- By MelissaShuford · Posted November 17, 2009
- Journal · 5 replies
- Thanks for all your prayers!!!!! Emmy won 2010 Junior Miss Claremont!!!! She is so giddy and excited!!! Love to see her so happy ...
Your Disease...
- By acain0022 · Posted November 16, 2009
- Discussion 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 ...
food ideas, recipe staples and meal info
- By SJsMom · Posted November 16, 2009
- Journal · 4 replies
- I have been meaning to post this info for quite some I have tried to compose a list of our household staples for a low sodium diet. My daughter has chronic kidney disease (fsgs and mn for all of you kidney ...
Can Allergy Test cause Relapse?
- By Mom2Gar · Posted November 16, 2009
- Journal · 3 replies
- Wondering if anyone's child was NOT Nephrotic at the time their child was tested by the pin prick allergy test and whether or not they relapsed. I'm afraid to have him tested, because when he is bit by ...
Tomorrow is the BIG Dr and many test day!!!!!
- By MelissaShuford · Posted November 15, 2009
- Journal · 3 replies
- I have butterflies and a little scared but tomorrow is the day...still can't figure out how I am gonna complete the metabolic stress test...nose clamped and mask on NO OXYGEN in either...hop on a treadmill ...
cancel
- By amanda_gee · Posted November 15, 2009
- Journal · 13 replies
- I am just letting everyone know, that I might be canceling my nephspace soon. I just didnt want anyone to wonder where I went. Amanda ...
Heading Towards Transplant Road
- By kalebsmommy · Posted November 14, 2009
- Discussion 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 ...
An Enchanted Evening to come tonight for Ms Emmy
- By MelissaShuford · Posted November 14, 2009
- Journal · 1 reply
- I am so excited for my Em....she is participating in a pageant tonight that is a fund raiser to help bring an exceptional gospel band to town that she loves...it ha s so far been a very special time for ...
Help the Albumin Levels are not higher!
- By SoaringHigh · Posted November 13, 2009
- Discussion 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
- Discussion 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 ...
Any advice on PH would be helpful and appreciated
- By MelissaShuford · Posted November 13, 2009
- Journal · 4 replies
- Now I have to focus a little on me and some medical issues...regarding my pulmonary hypertension...what are normal pressures and when do they usually start treatment...what kinds of treatments are the ...
Monday Big Day with PH Dr
- By MelissaShuford · Posted November 13, 2009
- Journal · 0 replies
- Monday is my all day long Dr visits with Heart failure clinic for a Metabolic stress test...can't breathe well now with exertion but they are gonna clamp my nose mask me and put me on a treadmill...I ...
Bored...
- By acain0022 · Posted November 12, 2009
- Journal · 2 replies
- I just wanted to say thanks to everyone...I am really starting to love this site. I finally feel like there are people out there who understand what I am going through and have been going through. Even ...
Pregnancy...
- By acain0022 · Posted November 12, 2009
- Discussion 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 ...
Events and resources
