FSGS

Does this disease still exist or has the name changed?  The reason I am asking is because it is pretty difficult to find information on this.  Usually I find info for Chronic Kidney Disease or Polycystic Kidney Disease.  I am just curious if it is possible to have FSGS and remain stable for the rest of your life?  I was told initially when I got this that the time frame for kidney failure after diagnosis was usually 5-10 years.  I have had this almost 10 years ago (diagnosed through a biopsy).  I really don't have any symptoms other than the proteinuria and my creatine level has been at 1.3 for the past 5 years.  It was 1.1-1.2 for the first 5 years.  Sometimes I wonder if I really have anything at all.  I know excessive protein in the urine is not normal, but are there other diseases that cause proteinuria?  I am 35 years old so I was diagnosed shortly after my 2nd child was born 10 years ago and have had other health problems that are only found through MRI scans.  Wouldn't know I had anything wrong if it weren't for the scans.  I currently have a cyst on my pancreas and I have gone through 5 surgeries for retinal detachments.  They don't want to do anything about the cyst on the pancreas for some reason so they just do scans every 6 months to make sure it doesn't grow too big.

[Dr Santos]

How are you? Focal segmental glomerulosclerosis refers to the appearance of the kidney tissue on biopsy:
                         focal - only some of the glomeruli are involved
                         segmental - only part of an entire glomerulus is involved              
                         glomerulosclerosis - refers to scarring of the glomerulus (a part of the      
                                                       nephron- functional unit of kidney)

Since FSGS is of unknown cause, it is difficult to treat.Proteinuria is the most common symptom of FSGS. Proteinuria may be a feature of the following conditions:    nephrotic syndromes, pre-eclampsia, eclampsia,  toxic lesions of kidneys,, collagen vascular diseases, dehydration, and strenuous exercise You can read more causes of proteinuria in this link: http://en.wikipedia.org/wiki/Proteinuria

Treatment of FSGS can be through nutritional management or nonimmunosuppressive therapy  to help some patients by decreasing proteinuria and improving kidney function. Here are some links about FSGS:
http://renux.dmed.ed.ac.uk/EdREN/EdRenINFObits/FSGSLong2.html
http://en.wikipedia.org/wiki/Focal_segmental_glomerulosclerosis
http://www.emedicine.com/med/topic2944.htm

I hope this helps. Take care and keep us posted.

[tacmom]

Thank you for your explanation.  I guess I had gone through the inital shock of my dr telling me that my kidneys would be failing in about 5-10 years only to find out that I am just fine 10 years later.  I have an appointment with my nephrologist in a few weeks so I will see if there has been any change since then.  I doubt it.  

I had pre-eclampsia/eclampsia with both of my pregnancies and I truly feel that my kidney damage is a result of my pregnancies.  I had gotten pregnant a 3rd time, but my nephrologist told my high-risk OB that it was just too risky for me to carry to term and recommended termination.  Due to this, I demanded a biopsy and the FSGS diagnosis was found.  

I was on a high dose of Prednisone for a year (100 mg daily) plus 100 mg of cyclosporin for about 6 months.  This really did not do anything for me other than cause me many nasty side effects, which made me feel worse than  having FSGS, so I asked the nephrologist to allow me to get off.  I was slowly weaned off the meds, but remained on the lisinopril.  Then about 2 years ago, I kept getting a really bad cough, so I asked to switch and I am very happy now being on Benicar.  I do not have high blood pressure, but was told that this is a necessary requirement in the management of FSGS.  

It may be possible that I just found FSGS way before most people know they have it since I was the one who demanded the biopsy.  Maybe most people already have alot of symptoms so that is why they are given the "kidney failure" prognosis of 5-10 years.  

[confident_skin]

I am a 28 yr old, AA female, and was diagnosed with FSGS about 9 years ago.  Althought I didn't take the diagnosis seriously and only began seeing a specialist last year.   Today, my levels are the same as they were at diagnosis; however, last year, while pregnant with my daughter, my nephrologist suggested I have my tubes tied to prevent further pregnancies (although I didn't want to, but I did) because I developed high blood pressure and persistant swelling.  Currently, he has prescribed linsipril to control the high blood pressure, but I am a natural freak and do not believe in taking so much medication.  I saw that Vitamin D was beneficial... Are there any other things I can do to keep the scaring under conrol?  I asked him (my nephrologist) if I should eliminate my alcohol intake, and he said that would not be necessary.
  

[Daisy1310]

Hi, I was diagnosed with severe fsgs in 96 when I was 15 and have Been in clinical remission for 11 years, and leak no protein whatsoever ... I know and as my renal consultant states I have won the lottery when it comes to my recovery.I'm now 29 years old and had asked about starting a family & I was advised not too ... Feel very confused as I read about fsgs patients who do go on to have a family and they leak protein ... I know every case is different , but I would love to hear from anyone in the same position as me . Thanks

[el_em_en_oh]

Most of us with genetic renal disorders, are unfortunately told not to have children, as there's a very high risk of passing it to your kids.

I don't have FSGS, but what I do have is genetic in nature with a high probability of passing to children.

I have no children as I would not wish my condition on my worst enemy.

I have Cystinuria, by the way. I make kidney-stones big and fast, and I require surgery about once a month on average to have them removed as they're too big to pass naturally.

Sorry for the bad news Sister. There's a 50/50 chance your children will come out with what you have. Now, the decision is yours... do you want to take the chance?

I didn't want to...

[claudia522]

My husband is 42 years old and has FSGS. He was diagnosed 10 years ago and has been treated by a nephrologist.  His kidney function is now only 50%, his creatinine level is 2.5 and his GFR is 28.  They said he would most likely need a transplant in 5 years.   Does anyone know what a creatinine level is when a transplant is needed?

[MK626]

Claudia,

I am a 28 year old male. I was diagnosed with FSGS about 1 month ago. My creatinine levels are are 9.8. For now my doctor is trying to treat FSGS with steroids. If it does not work I will need a transplant. It sounds like he still has a good chance to keep his kidneys. Good Luck!

[nanticokecreek]

I am writing in reference to your being told that you would be in kidney failure in 10 years or so......Just want to say that the mental suffering and worry that goes with what you were told, must have been awful.

In the beginning of my husband's kidney failure, the doctor told me that we should take vacations, have fun, right now, because he wouldn't last another three years.  I never shed so many tears in my life as I did then, whenever I was alone.  Well, he is still stable, though in a nursing home because of other problems and it's thirteen years.  There's no need for half the 'stuff' we go through.  I am so sorry for your diagnosis and worry.  It is truly hard.  Best to you   nanticoke