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Miracle drug for fsgs - Abadacept (Orencia)

thomasmatthew
  • By thomasmatthew · Posted yesterday at 10:10 pm
  • 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 ...

Options are running out.

HarveySB
  • By HarveySB · New reply yesterday at 9:54 pm
  • Discussion in Adults with MCD · 8 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 ...

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 ...

MCD treatment maze

gottwey
  • By gottwey · New reply April 16, 2014
  • Discussion in Adults with MCD · 4 replies
  • I was diagnosed with adult MCD @ age 50 confirmed by renal biopsy in January 2013. I was started on prednisone at 60mg per day the last week in January and by February 14, 2013 was in complete remission ...

help with urine test strip

hars
  • By hars · New reply April 16, 2014
  • Discussion in Adults with FSGS · 7 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 ...

Great Opportunity

Macygracesmommy
  • By Macygracesmommy · New reply April 16, 2014
  • Discussion in Children with nephrotic syndrome · 1 reply
  • “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 ...

Ticks me off

AugustaGirl
  • By AugustaGirl · New reply April 16, 2014
  • Journal · 4 replies
  • I'm TOO HEALTHY for Disability, but TOO SICK for Life Insurance. I tried to get life insurance in case something does happen to me, my house will be paid for so my husband won't have to worry about making ...

Cramps in legs

gurung
  • By gurung · New reply April 16, 2014
  • Discussion in Adults with nephrotic syndrome · 2 replies
  • Hello, once in a while especially after a hectic day , I experience some type of cramps in the lower legs.Though my msgn symptoms have vanished , for the last one year I feel weak and depressed.Any one ...

Boost VHC Drink - 530 Calories

Duvie
  • By Duvie · New reply April 15, 2014
  • Journal · 67 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 ...

"A wake-up call from a young e-patient: 'I need to be heard'”

John2
  • By John2 · Posted April 15, 2014
  • Journal · 0 replies
  • From: John Novack, Communications Director, Inspire 4/15/14 Dear members, I am writing to share with you a new guest column in "Scope," the Stanford University School of Medicine's medical blog: "A wake-up ...

EXCESS PROTEIN SPILLAGE

Satwekar
  • By Satwekar · Posted April 15, 2014
  • Discussion in Adults with nephrotic syndrome · 0 replies
  • In normal healthy person the PROTEINS (ALBUMIN) ARE RETAINED IN SIDE THE BODY AND WASTE PRODUCTS LIKE UREA AND CREATININE (NO THRESHOLD SUBSTANCE) ARE THROWN OUT THROUGH URINE WHILE IN PAHTOLOGICAL CONDITION ...

NEPHROTIC SYNDROME

Satwekar
  • By Satwekar · New reply April 14, 2014
  • Discussion in Adults with nephrotic syndrome · 7 replies
  • As of to date the etiology for this condition is not being established. I feel that today's research on this topic seems to like BEATING AROUND THE BUSH as there is only CONTROL FOR THIS CONDITION NOT ...

FSGS

joda29
  • By joda29 · New reply April 14, 2014
  • Journal · 14 replies
  • I have a question my 29 year old son has FSGS and started prednisone 60 mg treatment on March 10, yesterday, April 10 he had a lab test and his creatinine has gone up as follows: I will type in the range ...

Secondary FSGS- How much water

nopretentions
  • By nopretentions · Posted April 14, 2014
  • Discussion in Adults with FSGS · 0 replies
  • It seems we live in a world of often conflicting information. One study says do this and the other immediately says the exact opposite. I have read up on things I should be doing only to find out later ...

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