Nephrotic Syndrome and FSGS Support Community

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does prednisone or cellcept lower function?

By popsycle · New reply yesterday at 6:52 pm
Discussion in Adults with FSGS · 5 replies
Hi, I just went to the neph today and I'm down to 20% kidney function! :( I have been in the high 30's to 40's for quite a few years now and I have been on cyclosporine for about six years. The Neph took ...

Restricting Fluids

By Joanne62 · New reply yesterday at 5:37 pm
Discussion in Adults with nephrotic syndrome · 2 replies
Please stop telling people to restrict their fluids this is very dangerous. If you have been told to restrict fluid by your Nephrologist then fine but those of you who are not told to restrict them then ...

Third time lucky?

By kduk · New reply yesterday at 5:34 pm
Discussion in Adults with MCD · 3 replies
So yesterday I got my blood works back and they confirmed what the albustix were telling me. I'm having a full discrete relapse. I've started the pred at 30 this morning so I'm doing the edgy/tired weird ...

Recovery from a relapse without pred

By Skopi · New reply yesterday at 4:19 pm
Discussion in Children with nephrotic syndrome · 24 replies
I’d just like to share with you our success strory. Unfortuntely there are not too many of these on this site. After 8 months remission and 5 months med free period my son relapsed. It was due to a virus ...

Five million

By Brian · New reply yesterday at 4:06 pm
Journal · 205 replies
Dear members, Yesterday, Inspire reached a milestone: five million posts written by members! Each of these posts, and the 700 million words they contain, are a simple measure of how much we all do to ...

Absolute Pain

By ECawley · New reply yesterday at 3:58 pm
Journal · 7 replies
I am up again. The third day this week. I wake in the early morning hours, generally around 3 to 5 a.m. in so much pain, it hurts to breathe. Indigestion, I guess. Nothing helps. I vomit, gag, pace back ...

It wasn't a miracle after all..

By Mrs_C · New reply yesterday at 11:53 am
Discussion in Adults with FSGS · 12 replies
About 6 or so weeks ago I posted a thread saying that my levels had gone down considerably without medication.... well, I saw the neph yesterday and they have gone right back up, actually a bit higher ...

Cytoxan

By cesegers · New reply yesterday at 11:07 am
Discussion in Adults with MCD · 5 replies
Is there anyone out there who has been on cytoxan for awhile. I have been on it for almost a month, and feel weak and nauseous when I first get up in the mornings. I had to stop taking it for a week when ...

Genetic testing for FSGS

By Pdf · New reply yesterday at 10:56 am
Discussion in Children with FSGS · 3 replies
My daughter was first diagnosed with mcd about 7 month ago. She was put on a very high amount of prednisone but when we tapered her off she relapsed and then prednisone just stopped working. She had a ...

Low Albumin

By jgneph · New reply yesterday at 10:37 am
Discussion in Children with FSGS · 1 reply
My son has FSGS and has stopped spilling alot of protein (down to about in between trace and 30). However, his albumin has not gone back up to normal (it has gone up from 2.1 to 3.0 but still well below ...

Short of breath

By kerkoke · New reply yesterday at 10:14 am
Discussion in Children with MCD · 3 replies
I have a question for MCD people. My daughter (16) is constantly trying to get a deep breath. She says she feels like she just can't get one of those satisfying breaths. We have discussed this with docs ...

painful/heavy arms

By melis01 · Posted yesterday at 8:47 am
Journal · 0 replies
i was diagnosed with mcd in october 2012, i am still on pred , cyclosporin, lasix,eltroxin, blood pressure and cholestrol meds. i have had the normal side effects and loss of hair but the last few weeks ...

Antibiotic use

By MacLean · New reply yesterday at 3:22 am
Discussion in Adults with nephrotic syndrome · 12 replies
Just wondering which antibiotics are considered safe for those of us with renal diseases. Any suggestions? I know Septra is, but I went into anaphylactic shock the last time I took that one. It would ...

One year without hospital stay is a real great thing for us...

By mango1990 · New reply yesterday at 2:19 am
Discussion in Children with nephrotic syndrome · 2 replies
Hi all... I have joined this site almost a year ago, when my little brother got admitted to hospital with a relapse, while he was on pred and MMF. During that hospital stay, he had a biopsy and it confirmed ...

Prednisone and Relapse

By DennisD · New reply yesterday at 12:35 am
Discussion in Adults with FSGS · 21 replies
I have gone over seven years with pretty excellent quality of life and control over my FSGS which started out pretty badly. Up until the recent relapses this year, I was on 2 x 500 mg Cellcept/Mycophenolate ...

origin of your Nephrotic Syndrome

By Mckeegs · New reply May 17, 2013
Discussion in Children with nephrotic syndrome · 37 replies
How did everyone's Nephrotic Syndrome start? My daughter had a very healthy summer as a three year old. She got a full dose (for three and up) flu shot and a few days later started swelling. No decisive ...

TAPERING OF PRED

By reillysan · New reply May 17, 2013
Discussion in Adults with MCD · 31 replies
I am coming off Pred 60mg to 40mg...I am exhausted, muscles tremor and I want to eat everything I see. Is this normal.........PS I am not eating everything I see and when I do it's fruit/veggies/no salt....looking ...

How much protein should be included in ns diet

By cesegers · Posted May 17, 2013
Discussion in Adults with MCD · 0 replies
Has anyone had their doctor tell them how much protein should be eaten each day? Mine hasn't really said, and I haven't been able to really pin down an amount in the articles I have read. I know that ...

Fibrillary Glomerulonephritis (GN)

By kisnsmooch · New reply May 17, 2013
Journal · 5 replies
I was just diagnosed with Fibrillary GN, stage 3. Currently my doctors are writing letters to my insurance company in the hopes of getting them to allow a drug called Rituxan to be given to me. This drug ...

In It For The Long Run...

By IAmJen · New reply May 17, 2013
Journal · 10 replies
Having been on 60mg Prednisolone for 14 weeks, my albumin finally reached a normal level. The consultant decided that I can't stay on 60mg any more because the side effects have become too severe and ...

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