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Recommended discussions

New Swine Flu Shot

Deb3
  • By Deb3 · Posted September 2, 2009
  • In Adults with nephrotic syndrome · 2 recommendations
  • I am confused if the new swine flu shot is a good idea for adults/children with NS or MCD. I have already read that they should not receive vaccations. Anyone been advised by their doctors or Neph. doctors ...

PREDNISONE VERSES PROGRAF

GAILRD
  • By GAILRD · Posted August 12, 2009
  • In Children with nephrotic syndrome · 2 recommendations
  • I NEED SOME IMPUT ABOUT THESE MEDS. MY CHILD HAS BEEN ON PREDS FOR OVER TWO YEARS NOW AND ALWAYS RELAPSES AT ABOUT 10MG. EVERYTHING ABOUT HIM SEEMS TO BE DOING FINE EXCEPT FOR THE RELAPSES. TODAY OUR ...

Stem Cell Research - Cord Blood - FSGS

sjr
  • By sjr · Posted June 9, 2009
  • In Adults with FSGS · 2 recommendations
  • Hello Everyone, My sister has FSGS. She's 28 y/o and has had it for 14 years. I am having my first child in December and was wondering if anyone has heard anything about saving cord blood for the stem ...

FSGS Possible Origin (or just a coincidence?)

Andre33
  • By Andre33 · Posted March 1, 2009
  • In Adults with FSGS · 2 recommendations
  • This may sound crazy, but crazier things have probably been suggested! Some 3 weeks after my slab foundation house was treated for termites with 500 gallons of what the pest control company called Termidor ...

Galactose trial

stretch
  • By stretch · Posted February 14, 2009
  • In Children with FSGS · 2 recommendations
  • Hi all. I was wondering has anyone tried the Galactose trial for fsgs ans what was the outcome ...

levamisole

ness1
  • By ness1 · Posted March 29, 2008
  • In Children with nephrotic syndrome · 2 recommendations
  • My son stopped responding to steroids after 4 years and the doctor put him on Levamisole which is a drug primarily used for colan cancer. He had to take these for a year. He never relapsed on it and has ...

Help the Albumin Levels are not higher!

SoaringHigh
  • By SoaringHigh · Posted November 13, 2009
  • In Children with FSGS · 1 recommendation
  • 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 ...

What if nothing works

birdlegs
  • By birdlegs · Posted October 29, 2009
  • In Adults with FSGS · 1 recommendation
  • My last two treatments have not improved my spillage at all. My Dr believes that I have progessed to stage 3 CKD. I've just started Cellcept for the next two months. Just in case this doesn't work either ...

Swelling and dealing???

lalo
  • By lalo · Posted October 22, 2009
  • In Children with nephrotic syndrome · 1 recommendation
  • Can anyone tell me how to live with this edema? My daughter is going through a bad relapse at the moment, and has less pee and more puff! I try to stay positive, and we keep her on a very low salt diet ...

Back (flank) pain

Tanya1
  • By Tanya1 · Posted October 20, 2009
  • In Adults with FSGS · 1 recommendation
  • was wondering if anyone else has back or flank pain. For the past 6-7 mo I have had pain on the left side of my back. It is like a muscle spasm sometimes. I read where this is comon with people that have ...

Allergy to Mold & Yeast Mycotoxins - IgA nephropathy

moz100
  • By moz100 · Posted September 22, 2009
  • In Adults with nephrotic syndrome · 1 recommendation
  • My 21 year old son was recently diagnosed with IgA nephropathy after a sore throat and eczema flare up. We think he may be allergic to molds and yeasts, he is cutting them out of his diet, below is what ...

Yikes! A "year and a half" for cellcept to have an effect?

Andre33
  • By Andre33 · Posted September 14, 2009
  • In Adults with FSGS · 1 recommendation
  • Been trying to wean off prednisone... first was cyclosporin, 3 months, then changed to cellcept. I have been on 1,000 mg per day for almost three months, then they dropped pred from 30 to 20 a couple ...

How long is remission before Renal Failure

msoko
  • By msoko · Posted September 8, 2009
  • In Adults with FSGS · 1 recommendation
  • Hi, I have been battling FSGS for 15 years with multiple flare ups. I was just wondering what's the longest anyone has ever had FSGS before having to go on dialysis or have transplant? Is it possible ...

Holistic treatment for Nephrotic Syndrome

JAYDARL
  • By JAYDARL · Posted August 26, 2009
  • In Children with nephrotic syndrome · 1 recommendation
  • Has anyone of you out there tried holistic treatment for your child with NS? Our daughter Julia has steroid dependent NS and has been on and off the Prednisone since March 09. Everytime the MD tapers ...

FSGS and Anemia

msoko
  • By msoko · Posted August 22, 2009
  • In Adults with FSGS · 1 recommendation
  • Anyone out there suffer from Anemia? I have had FSGS since 1995 and ever since have had low hemoglobin. My doctor always tells me that she does not know why because my kidney function is too good to have ...

School is upon us need some input

MelissaShuford
  • By MelissaShuford · Posted August 6, 2009
  • In Children with FSGS · 1 recommendation
  • Getting ready to start our first 504 plan and need/want all the input I can have to help EMMY!!!! Please reply ASAP with any advice to use at school to keep her well...God Bless all of you and best of ...

In the beginning of Dx FSGS

MelissaShuford
  • By MelissaShuford · Posted July 22, 2009
  • In Children with FSGS · 1 recommendation
  • Hi everyone, I am a little uncertain and scared and have lots of questions. Emmy my daughter has early proliferative FSGS. She is 10yrs old. She is chronically tired and gets sick with weird stuff all ...

Prograf Treatment?

Tori2009
  • By Tori2009 · Posted July 10, 2009
  • In Children with nephrotic syndrome · 1 recommendation
  • Hello Everyone, My daughter has been diagnosed with MCD since Dec 08. After treatment with Prednisolone and several relapses, she has grown resistant to steroids alone. She had her Renal biopsy last month ...

Relapse

bobbikins
  • By bobbikins · Posted July 9, 2009
  • In Children with FSGS · 1 recommendation
  • I just need to vent! My 5 yr old son, Matt, has had FSGS since he was 2 and as of April 14, was in remission and just on enalapril. As of late last week , he has relapsed and is so swollen he can barely ...

Surviving at school

MelissaShuford
  • By MelissaShuford · Posted July 9, 2009
  • In Children with FSGS · 1 recommendation
  • My daughter Emmy has been very ill. We were just told her biopsy indicates probable FSGS. They were not able to be absolute with the DX criteria but the were unable to rule it out as well. We go back ...

Events and resources

The NEPHCURE Walk -- Saving kidneys, saving lives.

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