Hello,
Wondering if anyone who has fsgs can help lessen my worries. I'm 60 yr. old female, been going thru this for last year. Dr. doesn't tell me anything which freaks me out. I've read it may take 2-20 years for this to progress to esrd and wondering about others experience, timeline. I'm on losartan and amlodipine only. High bp is main thing right now. Not knowing what/when to expect a further decline is very worrisome. Any suggestions? Thank you in advance.
Hi. I too have one kidney. I too have some scarring on the outer edge of the remaining kidney, but have not been classified as having fsgs as most elderly (i am 71) have some level of scaring on the outer edge of kidney. In fact I have fairly frequent CT scans and ultrasounds (I have cancer in addition to CKD) and only one time was the scarring even mentioned.Now some aspects of your post are confusing. To my knowledge FSGS does NOT have stages. You say the biopsy calls yours stage 3a. Stage 3a is level of your kidney disease. I too am stage 3a (sometimes 3b). This is NOT based upon fsgs. This is based upon how much creatinine is in your system and not being properly filtered out by your remaining kidney. It is COMMON for those with one kidney, especially no longer in the 20s to 40s, to have higher levels of Creatinine in their system as one kidney is not able to perform the duties that 2 normally would. In "younger" people the remaining kidney expands and can function at near normal levels of a person with 2. So do NOT be automatically overly dejected if you are at stage 3a. 3a is MODERATE kidney disease. It is NOT a death sentence. Now for people with fsgs you have found that the fsgs timeline is 2 to 20 years. Here is what the National Kidney Foundation reports about FSGS:
"he outcome is very variable, and you will need to ask your specialist how things are likely to be in your case. The possibilities are:
It may continue unchanged for many years, requiring only regular check-ups with blood tests.
It may go away on its own in some cases.
If there is fluid retention with ankle swelling, this may get worse.
In some cases kidney failure develops, leading to the question of dialysis or transplantation".
I urge you to visit their website on this subject as it contains a lot of information and hopeful.
kidney.org.uk/focal-and-seg...
One more thing. The typical "treatment" for a person with fsgs is an ACE inhibitor which also helps with blood pressure. You mentioned the drugs you take but did not mention an ACE. I too take amlodipine. But I also take lisinopril which not only aids in blood pressure reduction but has been shown to be effective in reducing the amount of protein in urine. Patients who take atorvastatin in combination with lisinopril have shown a 22% decrease in urine protein. Ask your doctor about this.
Hi RickHow, I've been taking 25 mg. of losartan (an Ace inhibitor) and protein as of today is at 827 so down from 1200. Good news. But it has caused my gfr to drop 10 points. I've read it's a side effect of the ace and that if I quit taking it it would go back up. Have a Dr. appt. tomorrow to discuss. Still confused over primary and secondary. Only thing I can think of is high blood pressure. No immune tests were positive. Keep you posted!
Actual losartan is not an ACE. Lisinopril belongs to the classification of drugs called ACE (angiotensin-converting enzyme) inhibitors, while losartan is in the ARB (angiotensin II receptor-blocker) class. Both are used treat bp, And both help to reduce protein in urine for those with CKD. If the one you are taking is not doing the job sufficiently, try the other.
Additionally. I have been researching a bit more on fsgs. I see there are 3 types:Types of FSGS include:
Primary FSGS. Many people diagnosed with FSGS have no known cause for their condition. This is called primary (idiopathic) FSGS.
Secondary FSGS. Several factors, such as infection, drug toxicity, diseases such as diabetes or sickle cell disease, obesity, and even other kidney diseases can cause secondary FSGS. Controlling or treating the underlying cause often halts ongoing kidney damage and might lead to improved kidney function over time.
Genetic (also called familial) FSGS. This rare form of FSGS is caused by genetic mutations. It's suspected when several members of a family show signs of FSGS. Familial FSGS can also occur when neither parent has the disease, but each carries one copy of an abnormal gene that can be passed on to the next generation.
Ask your doctor about yours. It says other kidney diseases (and you are 3a CKD) can cause what is called secondary FSGS and "often halts ongoing kidney damage and might lead to improved kidney function over time".
Wondering about protein in urine
32, male, strange test results
Creatinine/gfr fluctuating
confused over GFR readings
Referred by GP but renal team won't see me
