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In Remission

sabrinat
  • By sabrinat · New reply 8:03 pm
  • Discussion in Adults with nephrotic syndrome · 1 reply
  • I have been battling membranous glomeronephritis for almost a year now. 8 months of Cytoxan and Prednisone and I am finally in remission!!!! Just had to share - I have whined so much - I am ready for ...

Anyone ever had MCD turn out to be FSGS??

jburke
  • By jburke · Posted 7:52 pm
  • Journal · 0 replies
  • I was just at my nephrologist and he said if I keep spilling more protine they may have to take another biopsy to see if what I actually have is FSGS. This is deffinetly new to me I've been dealing with ...

Unsure about my Neph Doctor??

annsteph
  • By annsteph · New reply 7:01 pm
  • Discussion in Adults with FSGS · 10 replies
  • I found out that I have FSGS in 2009 and I am still confused with what my doctor tells me. I did a 24/pee test and my protein level went down without any meds but he still put me on a bp med I take it ...

Curious About The benifits Of Coconut Oil

Duvie
  • By Duvie · New reply 3:49 pm
  • Journal · 322 replies
  • This past week I've been hearing about coconut nut oil having a lot of great benefits on the body. Can anyone say for sure that coconut oil actually is working for some patients? Thanks for any responses ...

Uggo Ankles

barbiebarb
  • By barbiebarb · New reply yesterday at 5:26 pm
  • Discussion in Adults with FSGS · 7 replies
  • Is there anyone else out there that get super disgusting horrible ugly swollen legs and ankles when they sit at thier desks all day? My swelling is WAY better when I'm moving or when I run from meeting ...

Boost VHC Drink - 530 Calories

Duvie
  • By Duvie · New reply yesterday at 4:16 pm
  • Journal · 72 replies
  • Thanks to a lovely lady battling ALS, I have found out about this new Boost high- calorie drink to pass on to those struggling to maintain or to gain weight. Check it out online. Take special notice to ...

Options are running out.

HarveySB
  • By HarveySB · New reply April 21, 2014
  • Discussion in Adults with MCD · 19 replies
  • Contracted MCD when I was four. Never used to bother me when I was younger. From ages 15-21 (now) it's ruined my life. Constant relapses and steroids changing my appearance and causing serious confidence ...

FSGS and Parvo

rooksy
  • By rooksy · Posted April 21, 2014
  • Discussion in Children with nephrotic syndrome · 0 replies
  • My daughter became ill this past July and was diagnosed with Nephrotic Syndrome and later with FSGS (Collapsing Variant). She had been one of the healthiest kids I had ever met prior to that. If there ...

how many weeks after Rituximab infusion I should expect

miti
  • By miti · New reply April 21, 2014
  • Discussion in Children with FSGS · 12 replies
  • Pleaseeeeeeeeeeee help, If you know how many weeks after Rituximab infusion I should expect full or partial remission for my 3 years old daughter which was diagnosed with FSGS since Feb 2013 and resistant ...

Great Opportunity

Macygracesmommy
  • By Macygracesmommy · New reply April 21, 2014
  • Discussion in Children with nephrotic syndrome · 2 replies
  • “I attended the NephCure Lunch & Learn in Kansas City yesterday and it was very helpful. Several docs shared good info and it was all free. The info on renal diet was great and it was nice to meet other ...

Protein Restricted Diet for FSGS Patients

kidneyhealth
  • By kidneyhealth · Posted April 21, 2014
  • Discussion in Adults with FSGS · 0 replies
  • Restricted protein diet is associated with controlling proteinuria for FSGS patients. However, although many patients have been told to follow a low-protein diet, they still do not know how much protein ...

help with urine test strip

hars
  • By hars · New reply April 20, 2014
  • Discussion in Adults with FSGS · 8 replies
  • Hi there, I am wondering when is the best time to use the urine strips to check how much I spill . I would like to get results which compare well with the 24h urine collection. So far I have measured ...

Miracle drug for fsgs - Abadacept (Orencia)

thomasmatthew
  • By thomasmatthew · Posted April 19, 2014
  • Discussion in Adults with FSGS · 0 replies
  • Has anyone had experience with the "new" drug ABADACEPT. (Orencia) It is FDA approved for rheumatoid arthritis but not fsgs. I have reoccurant fsgs. New kidney being attacked by fsgs antibodies. Happens ...

Proposing an Aussie get together in the New Year....

br14nh
  • By br14nh · New reply April 17, 2014
  • Discussion in Adults with nephrotic syndrome · 52 replies
  • Hi All, I wondered whether people here who are located in Sydney would be interested in a get-together early in the New Year? I've often wondered what it would be like to actually meet someone with the ...

idiopathic fsgs all new to me

cozmodius
  • By cozmodius · New reply April 17, 2014
  • Discussion in Adults with FSGS · 5 replies
  • I am confused, this is all new to me and very upsetting. Turned my world upside down. I am currently taking 8 different meds everyday. BP, diuretic, antibiotic. prednisone, potassium, pantaprazole, sleep ...

Concerned grand

drasmi
  • By drasmi · New reply April 17, 2014
  • Discussion in Children with nephrotic syndrome · 1 reply
  • I am the grandparent of a six year old that may have developed a kidney disease, we are still in the testing stages of her disease to find out what it might be. We think they are leaning toward Iga nephrotic ...

Tacrolimus warning

DennisD
  • By DennisD · New reply April 17, 2014
  • Discussion in Children with FSGS · 3 replies
  • I have a 8 year history with FSGS. About six months ago, in an apparent attempt to improve high proteinurea despite GFR & Creatine in normal ranges (60 & 1.2), a USC Keck Neph started me on Tacrolimus ...

weight loss

shaheenvally
  • By shaheenvally · New reply April 17, 2014
  • Discussion in Adults with nephrotic syndrome · 2 replies
  • Hi everyone keeps telling me that I have lost alot of weight especially on the face.Has anyone else experience this ...

have MCD & need suggestions for joint pain

michelle_TN
  • By michelle_TN · New reply April 17, 2014
  • Discussion in Adults with MCD · 4 replies
  • I was diagnosed with MCD last September. Tried prednisone. It didn't work. Went on cyclosporine briefly but changed to tacrolimus (prograf) when switched to new Neph. I'm not real sure how the tacrolimus ...

L-glutamine for muscleloss

melissaflower
  • By melissaflower · New reply April 16, 2014
  • Discussion in Adults with FSGS · 2 replies
  • Iam just wondering if anyone of you know if it help to use l-glutamine? Since i became sick i have lost a lot of my muscle and weigth.. my wigth is 44kg, i have lost 6 kg.. and my doc do not recommend ...

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