Category Archives: FSGS

Hello, I’m a 41 year old woman who has had nephrotic syndrome for the last 3 years and I have just been diagnosed with FSGS as well. My creatinine is 124 and my GFR is 41. I have not responded to prednisone and tacrolimus is not working either. I have been told I’m not a candidate for chemotherapy type drugs as I have a poor response to steroids and have been told I will have renal failure in 2-5 years.

Focal segmental glomerulosclerosis (FSGS) is a very common cause of kidney failure and is very difficult to treat.  Many do not respond to treatments.  Your history is very consistent with the diagnosis of FSGS and you may have to consider … Continue reading

Posted in Ask the Doctor, FSGS, Kidney Failure, Kidney-Related Health Questions, Transplantation

Hello Dr. Spry, I was diagnosed with FSGS in 2014 after a routine labwork showed diminished kidney function. Creatinine levels have remain between 2.1 – 2.4 for the past 2 yrs, with kidney function between 35 – 40. Currently taking BP medications with avg reading of ~135/88. My only other ailment is my cholesterol being high, but so far I have not been able to tolerate the statin medication my doctors have provided me. I’m 37 yrs old and need to know what happens next? What steps can I take to prevent kidney failure? Is there any new health technologies that provide alternative treatment for my condition? Thanks.

Currently, the recommended treatment for focal segmental glomerulosclerosis  (FSGS) is based on the kidney biopsy and subtype of the disease.  In most cases, the basic treatment is to use ACE-inhibitors or ARB agents to treat and control blood pressure.  The … Continue reading

Posted in Ask the Doctor, Blood/Urine Testing For Kidney Disease, Chronic Kidney Disease, Diet/Nutrition, FSGS, Kidney Biopsy, Kidney-Related Health Questions, Laboratory Testing, Nephrologist, Treatments

Dear Dr. Spry, I am 31 years old. I am a man. I have glomerulonephritis and FSGS for 7 years. Now I take my medicine (Neoral sandimmun 4*25, Prednol 4mg/ day, Olmetec 20mg/day, Drisentin1*1) regularly but last 6 months I had problem with edema around my ankle. Besides edema I have muscle weakness and tiredness. I can’t move as I want to do. I am doing sport but It effects me very much. I can not go on long. I want to ask you how long I should take this kind of treatment? Is there any other treatments for this disease? I am desperate about my future.

Focal segmental glomerulosclerosis (FSGS) is a very difficult disease to treat.  In many cases, the disease is not cured but rather controlled.  If you have concerns about your treatment, this should be discussed with your nephrologist.  I am unable to … Continue reading

Posted in Ask the Doctor, Chronic Kidney Disease, FSGS, Glomerulonephritis, Kidney-Related Health Questions, Laboratory Testing, Medication and Kidney Function, Nephrologist, Treatments

My husband was told by his Dr. he has FSGS. He had a kidney biopsy. Now the Dr. told him his kidneys are working perfectly. But, something is causing protein to be eliminated in his urine. He is on prednisone. He has high blood pressure, and his leg is still swollen and a pinkish color. Can you help me to understand?

The kidney is not working normally if your husband has excess protein in the urine (proteinuria).  Focal and segmental glomerulosclerosis (FSGS) is a disease that damages the filters of the kidney (glomeruli) and leads to excess protein loss from the … Continue reading

Posted in Ask the Doctor, Chronic Kidney Disease, FSGS, Kidney-Related Health Questions, Laboratory Testing, Proteinuria, Symptoms and Side Effects, Treatments

I am a male suffering from nephrotic syndrome since I was 22 . Right now, my age is 28 and when I was 6 years old (in 1996) I got my first attack of severe swelling of body and protein loss. After that the attacks was frequent but not much severe then later it was ok. Again severe attack occurred in 2003 and 2012. I keep on using Prednisone from years and recently in August 2016 doctor suggested to stop using steroid as there no attack from many years, but thing is the relapse occurred after my stoppage of medicine within one month i.e. September 2016. During the attack Prednisone dose usage is 60mg /day and then gradually I will reduce the dose to 5mg/day in alternative days. Now I’m steroid dependent and due to this other complication like high cholesterol and hypertension problems being raised. Recent protein/creatine ratio is 600/177 mg/dl. Please suggest me medications, diet and also estimated cost for the treatment if available. I’m unmarried suggest to me whether I can marry or not, so that the girl whom I marry should not face any problems. Thanking you. Hoping for positive feedback.

The disease that you describe is known as Steroid Dependent Nephrotic Syndrome.  It is a very difficult kidney disease to treat.  In some cases, it is necessary to perform a kidney biopsy in order to know exactly what the kidney … Continue reading

Posted in Ask the Doctor, Blood/Urine Testing For Kidney Disease, Chronic Kidney Disease, FSGS, Kidney Biopsy, Kidney-Related Health Questions, Laboratory Testing, Medication and Kidney Disease, Medication and Kidney Function, Nephrologist, Symptoms and Side Effects, Treatments

Hi. I am 18 years old CKD patient, female, diagnosed with “focal crescentic and sclerosing glomerulonephritis”. (I asked you about my kidney biopsy result about a year ago.) My current creatinine level, according to the recent blood / urin examination on July 7th, is 1.02 ml/dl (69.4 ml/dl). And I also have persistent gross hematuria, 3+ with no proteinuria nor albuminuria. I took prednisolone for the past year (to be exact, for 462 days) (I got completely off of prednisolone on May 24th, 2016) and was able to get my creatinine level as low as 0.81 ml/dl (last October) (which my nephrologist said was a miracle) and gross hematuria to 3+ with less red blood cells for the first time since gross hematuria got to 3+. But unfortunately, with more than a year of taking in immuno suppressants, I was struck with influenza this february (which elevated my creatinine level drastically – up to 1.17 ml/dl) and have been getting colds on and off with persistent mild fever (my temperature is always 37.2~37.5 celcius degrees nowadays). Since there’s not much I can do about it medical wise – I have been drinking a cup of ginger tea every morning (raw ginger slices, letting them steep in boiling water) for about 2 weeks now. But what I am worried about is potassium in ginger tea. I know anything steeped in boiling water has a lot of potassium in it and potassium along with sodium, protein, and phosphorus is something CKD patients should be very cautious of. So would drinking ginger tea every day cause problems to my kidneys? Also, any piece of advice on keeping cold at bay and boosting up my immune system back to the way it was?

Ginger tea should not contain much potassium.  I suggest you review the United States Department of Agriculture Nutritional Database and learn about the known concentrations of chemicals in ginger.  You can access this information at:  https://ndb.nal.usda.gov/ndb/foods/show/271?manu=&fgcd= Boosting the immune system … Continue reading

Posted in Ask the Doctor, Chronic Kidney Disease, FSGS, Kidney Biopsy, Kidney-Related Health Questions, Medication and Kidney Function, Treatments

Our son (age 39) has Focal Segmental Glomerulosclerios since the age of 13. After treatment with many drugs in 1997 he started and still is taking cyclosporine, and also a blood pressure med and one for high cholesterol. His most recent doctor is now telling him he can try stopping his cyclosporine but has blood tests done every month. We worry that his disease will start up again because one time, many years ago he tried and it became active again.

I am unable to provide medical advice without performing a complete history and physical examination.  Focal Segmental Glomerulosclerosis (FSGS) is a very difficult disease to treat.  In some cases, a repeat kidney biopsy may help to guide treatment.  If your … Continue reading

Posted in Ask the Doctor, Chronic Kidney Disease, FSGS, Hypertension/High Blood Pressure, Kidney-Related Health Questions, Medication and Kidney Function, Nephrologist, Treatments

My late father had fgs and required dialysis for many years. He became aware of his ckd in his mid 40’s and passed away at age 67. His sister also died while on dialysis in her 30’s. And his nephew (from his other sister) has had 2 kidney transplants in his 30’s and 40’s). My question is: my BUN is currently 18 and my creatinine is 1.0. They have been stable around this number for past couple years. I have had a could kidney stones and do have some small cysts on my kidneys via ultrasound. I am a 45 year old white female. Am I at a great risk for developing focal glomerlosclerosis and or kidney disease or would it be more apparent by now if I was genetically destined to develop it? I am also a RN, btw :)

Unfortunately, genetically associated focal and segmental glomerulosclerosis (FSGS) is not a predictable disease.  I have seen it manifest at many different ages in many families.  Some in the young and some in the very elderly.  As you have FSGS in … Continue reading

Posted in Ask the Doctor, FSGS, Kidney-Related Health Questions

I have FSGS and Nephrotic Syndrome as well my kidneys are in Stage 3 of CKD. I am in my mid 20’s and often feel tired and non energetic. I was hoping you can help me find a diet plan for me. I have been thinking of food shopping lists and online recipes but I don’t know where to begin. Also I have GERD so, food is very confusing for me these days. For I have two different conditions as well as high blood pressure and Cholesterol. Please help me for a healthy meal is a healthy life for me and a better happier me.

I am a strong proponent of the DASH diet for patients with chronic kidney disease (CKD) Stage 3.  You should follow a low salt diet and limit sodium in the diet to less than 2300 milligrams per day.  You can … Continue reading

Posted in Ask the Doctor, Chronic Kidney Disease, Diet/Nutrition, FSGS, Kidney-Related Health Questions

My son is 17; he was diagnosed with FSGS secondary. He has a twin brother. Is stem cell transplant from twin a good treatment and where is this done if so?

Stem cell transplantation is not a recognized treatment for focal segmental glomerulosclerosis (FSGS).  I am not aware of any trials to study this treatment.

Posted in Ask the Doctor, Chronic Kidney Disease, Clinical Trials/Studies, FSGS