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New
Anyone using Acthar Gel to treat Nephrotic Syndrome?
- By PWinMO · Posted 5:42 pm
- Discussion in Adults with nephrotic syndrome · 0 replies
- I have just been diagnosed with Nephrotic Syndrome that was confirmed with a kidney biopsy. It has been caused by diabetes. I have been a diabetic for 27 years. Dr. has started treatment with ACE inhibitors ...
Prograf and diareah
- By worriedmomV · Posted yesterday at 8:04 am
- Discussion in Children with nephrotic syndrome · 0 replies
- My son has NS, he is 8. He seems to get diareah often. If he gets a virus, like a cough. He gets diareah too. Not fevers, but right to his tummy and the diareah. It lasts for 2-3 days. This happens about ...
Laughter is contagious
- By T-rae · Posted November 6, 2009
- Journal · 0 replies
- The kids that I babysit for are great. I love them! I just want to say that even though I am so swollen I am about to pop I can not stop smiling because the one year old that I am watching has this unbelievable ...
NephCure Patient Education Seminar in Miami 11/15
- By psafaeian · Posted November 6, 2009
- Journal · 1 reply
- The NephCure Foundation will be hosting a Patient Education Seminar in Miami on Sunday November 15th 2009! This is a great opportunity to learn more about nephrotic syndrome and FSGS, get your questions ...
NephCure Patient Education Seminar in LA on Saturday 11/7
- By psafaeian · Posted November 6, 2009
- Journal · 2 replies
- Just a reminder! The NephCure Foundation will be hosting a Patient Education Seminar in Los Angeles this Saturday November 7th 2009! This is a great opportunity to learn more about nephrotic syndrome ...
Tapering off Prednisone
- By shawny816 · Posted November 6, 2009
- Discussion in Children with nephrotic syndrome · 3 replies
- My son was on Prednisone 5ml=15mg twice a day for a month. Today we had our month check up and his doctor lowered it to 71/2ml roughly 20mg every other day. Does this seem like the norm? He has 0 protein ...
Scrotal swelling/pain on Prednisone
- By alisan · Posted November 6, 2009
- Discussion in Children with FSGS · 5 replies
- Hi all, I know this may be a bit personal, but for the parents with little boys with FSGS, did any of them complain about scrotal pain? My 6 yr old has been on high dose Pred for almost a week and I have ...
Feeling blah
- By T-rae · Posted November 5, 2009
- Journal · 3 replies
- I am feeling down. All day I have felt tears welling up, they have yet to spill out but damn I am so overly emotional at this point. I am so thankful that I like my job now and I don't mind being there ...
Change of Med Regimen
- By Beensoblessed · Posted November 5, 2009
- Discussion in Children with nephrotic syndrome · 0 replies
- My daughter was diagnosed Sept of 08. She's been on prednisone and celcept and has had 2 relapses despite slow removal from the steroids. She hasn't grown much & this is a concern to her dr. He wants ...
Too new to know what is happening
- By stars200 · Posted November 3, 2009
- Journal · 5 replies
- Just diagnosed with FSGS. Really nervous and scared so far about what I have read. The Neph was supposed to call today after she went over the report and to discuss what we should do. She did not call ...
Doing the Nephcure walk in tampa Fl. December 12th any one going?
- By QUINNRENEE · Posted November 3, 2009
- Discussion in Children with nephrotic syndrome · 2 replies
- Doing the nephcure walk in tampa Fl. looking for familys that are attending ...
Tummy aches with Pred
- By alisan · Posted November 3, 2009
- Discussion in Children with FSGS · 9 replies
- My 5 year old was just started on Prednisone 3 days ago and has been complaining of stomach pain and nausea. Mostly occurs 1st thing in the morning and after lunchtime. He's also taking enalapril and ...
waiting
- By dink2061 · Posted November 2, 2009
- Journal · 0 replies
- I am still waiting for the meds to kick in, retained 25lbs of water and the easiest of tasks now totally wind me. Ive been spending lots of time catching up with some great people here on Nephcure and ...
Relapse
- By T-rae · Posted November 2, 2009
- Journal · 5 replies
- Well here I go again. Wish the swelling would go away. I hate how it feels, hate how it looks, wish I didn't sound so vain. That's life I wish I could cry, but I will not let myself this time. I am just ...
Help
- By littleflowercure · Posted November 1, 2009
- Discussion in Adults with nephrotic syndrome · 1 reply
- My father is in ICU right now. He is stuck in a continous afib loop, Dialysis, edema, olcers, he is type A positive, it came on suddenly, He is on predisone, lasix, sorry my spelling stinks. I feel like ...
Embarrassing question - severe rectal pain
- By mamagemini · Posted November 1, 2009
- Journal · 0 replies
- Anyone have severe rectal pain? I have been to Urgent care 2 times and the ER once cause Urgent care had no female on call. No hemorrhoids on the outside so what is wrong? They always give me numbing ...
relapsing NS child and getting an H1N1 shot..do you or not?
- By worriedmomV · Posted November 1, 2009
- Discussion in Children with nephrotic syndrome · 12 replies
- Has anyone gotten the H1N1 vaccine for their neph child while the child is relapsing and on Prograf? Not that I can find one anyhow, but my son's Dr said get the injectable as soon as possible whether ...
does anyone notice a pattern?
- By dink2061 · Posted October 31, 2009
- Discussion in Adults with FSGS · 4 replies
- It has been a LONG time for me, 30 years roughly, but I was wondering if anyone notices a pattern to the swelling? First in the legs and ankles, then the hands and then......it seems it all goes to the ...
PLEASE can you HELP....?
- By AnsabIqbal · Posted October 31, 2009
- Discussion in Children with FSGS · 1 reply
- hi all ...i am 18.i had fsgs almost 1.5 years before ...THANKS GOD it is mostly recovered ...please can anyone tell me that is it fully recoverable and how many chances are there for it to reoccur ....and ...
Adjuvant free H191 Vaccination or not?
- By 4myangel · Posted October 31, 2009
- Discussion in Children with nephrotic syndrome · 1 reply
- Just wondering if anyone has info on pros/cons of the adjuvant free or adjuvant H1N1 vaccine. Our son has relapsed in October & am tapering his pred. Now on 40mg every other day. Have heard the adjuvant ...
Events and resources
