The NephSpace Support Community connects patients, families, friends and caregivers for support and inspiration...More about this group

All new and active discussions & journals

Allergies & Nephrotic Syndrome

Dux
  • By Dux · New reply 4:04 pm
  • Discussion in Children with nephrotic syndrome · 7 replies
  • Our 13 daughter Laura was diagnosed with Igm Nephropathy over 4 years ago, with 13% of her biopsy showing FSGS. When this happened, I literally spent hours researching the relationships of allergies (foods ...

CellCept...?

tr9736
  • By tr9736 · New reply 3:19 pm
  • Discussion in Children with nephrotic syndrome · 4 replies
  • 2nd line drugs are very confusing... I've read so many posts of different drugs once you become pred dependent, resistant, etc... I am confused as to what determines the 2nd drug is used? Cytoxan, cyclosporine ...

Relapse question?

kbarber2007
  • By kbarber2007 · New reply 3:08 pm
  • Discussion in Children with nephrotic syndrome · 4 replies
  • Our daughter is in her first relapse since being diagnosed with MCNS. Her nephrologist has uped her dose back to the 1 tsp twice daily. I was wondering how many days does it usually take for the prednisone ...

Proteins went up and creatine did too.....

Beth75
  • By Beth75 · New reply 8:03 am
  • Discussion in Adults with nephrotic syndrome · 2 replies
  • My proteins went from 2 to 2.6 but my creatine went from 2.8 to 3. I am confused by this as I would think my proteins would go down as my creatine went up??? my Neph was happy that my creatine went up ...

I think I have FSGS instead of MCD

vanessakb
  • By vanessakb · New reply yesterday at 10:25 pm
  • Discussion in Adults with nephrotic syndrome · 7 replies
  • So I went to see my nephrologist today and it did not go so well. After upping my cellcept an extra 500 mg, my protein levels did not move. I went in a few days before to do lab and my neph did not have ...

does salt make you worse?

Beth75
  • By Beth75 · New reply yesterday at 6:48 pm
  • Journal · 14 replies
  • So the past couple of weeks, I have had barely any bubbles in my urine and I had normal ankles (well pretty close w/out taking the diuretic) and so I am thinking I can't wait to do my test and I must ...

Deflazacort

Queenie
  • By Queenie · New reply yesterday at 3:58 pm
  • Discussion in Adults with FSGS · 1 reply
  • Hi, does anyone have any information on the drug Deflazacort? I am still very new to this FSGS thing and trying to learn as much as possible. I just finished reading the book "Coping with Prednisone ...

Kidney function

soccer3
  • By soccer3 · New reply yesterday at 1:17 pm
  • Discussion in Adults with FSGS · 4 replies
  • How many of you have that have had FSGS have had an increase in function. My husband went from 22% in 2005 and currently is at 68%. He takes supplements (BP and cholestol meds) that he thinks is helping ...

New feature - additional reply notifications

Walter
  • By Walter · New reply yesterday at 10:02 am
  • Journal · 19 replies
  • Hello everyone. We just added a new feature to help you follow the conversations that you are participating in. You will now get a notification whenever someone replies directly to one of your replies ...

Fatigue, dizziness, and nauseousness

Jenny1
  • By Jenny1 · New reply May 8, 2008
  • Discussion in Adults with FSGS · 9 replies
  • I have had FSGS for 22 years and have been very stable in Stage 3. Lately, though, I've been feeling incredibly fatigued with bouts of dizziness and nauseousness, and my ankles and feet have been swelling ...

Those of you who are in remission...

smhong86
  • By smhong86 · New reply May 8, 2008
  • Discussion in Adults with nephrotic syndrome · 7 replies
  • I've tapered off of prednisone about a month and a week ago... My urine still reads negative to trace range in the dipstick but whenever I've worked too much or stressed my body out, sometimes I get a ...

Define stages of FSGS

Boussaar
  • By Boussaar · New reply May 8, 2008
  • Discussion in Adults with FSGS · 1 reply
  • I would like to know what are the stages of FSGS. I see this referred to all the time and I cannot find anyting about it. I understand acute and cronic renal failure and ESRD but not stages ...

Spilling 17 grams of protein a day! Being treated with cellcept and prednis

ALE2003a

How long until kidney failure?

jijbarton
  • By jijbarton · New reply May 7, 2008
  • Discussion in Adults with FSGS · 22 replies
  • I was got sick back in March 2001 and was later diagnoised w/ FSGS. I get tested every 4 months or so to see where I am on the progression of this disease. I am around 35pct function right now and my ...

Bruising

mamagemini
  • By mamagemini · New reply May 7, 2008
  • Discussion in Adults with FSGS · 3 replies
  • I know there was a thread on this before but I just wanted to get all of your ideas on this...yesterday I saw this HUGE bruise on the bck of my leg - behind my knee. I mean like about 5 inches around ...

Ya know....

mamagemini
  • By mamagemini · New reply May 7, 2008
  • Journal · 19 replies
  • I was just thinking...dangerous I know...but the 2 nephro doctors I have seen both tell me that I am the ONLY white female here that has this. I see on here A LOT of us have it no matter what color or ...

Pregnancy and FSGS

allisonejw84
  • By allisonejw84 · New reply May 5, 2008
  • Discussion in Adults with FSGS · 10 replies
  • I am 23 years old and do not have any kids. I desperately want them. I have read online that once your kidneys start to fail, you cannot have kids without serious complications. I know everything I have ...

Has anyone experienced this?

mamagemini
  • By mamagemini · New reply May 5, 2008
  • Journal · 7 replies
  • In the past 6months I have noticed a numbing, itchy feeling that drives me nuts. It is in my back under my right shoulder blade. I have asked people to look at the area and there is nothing there...makes ...

Relapse Journal

johnh
  • By johnh · New reply May 4, 2008
  • Journal · 8 replies
  • May 8 So today I got the news from my doctor, my ratio is 2.5. If I go much longer I am going to slip into nephrotic range so back to prednisone. Tomorrow morning I begin 80 mgs a day, probably for 3 ...

disappointed

vanessakb
  • By vanessakb · New reply May 4, 2008
  • Journal · 5 replies
  • so my protein levels stayed at 3.7, even after I upped my cellcept to 1500 vs 1000. I am feeling very sad and disappointed, frustrated, and depressed. I want this over. I want to be healthy. I want my ...

New members

Please sign in to see new members. New user? Join here.
Forgot password?
Keep me signed in on this computer until I sign out

Discussion topics

You

About this group

The NephSpace Support Community connects patients, families, friends and caregivers for support and inspiration. The NephSpace Support Community is sponsored by The NephCure Foundation in partnership with Inspire.