University Hospitals of Leicester

NHS Trust

Leicester General Hospital

a patients’ guide

Focal and Segmental

Renal Services
& Urology
Glomerulosclerosis
Directorate (FSGS)

3/05/JP
 Questions regularly asked by Patients

FSGS

This is a type of kidney disease, also called “focal

and segmental glomerulosclerosis” or just “focal
sclerosis”.

What is FSGS?

Scarring within the kidney which can only be seen clearly

under the microscope. Therefore it is normally only
diagnosed after a biopsy test of the kidney. What we see
under the microscope is that the “glomeruli”, which are the
tiny structures which filter the blood to make urine, are
scarred (or “sclerosed”).

F S G S
 W h a t a re t h e S y m p t o m s o f F S G S ?

These are variable from case to case. In many cases, there are
no symptoms, but the damage to the glomeruli causes some
protein to appear in the urine. Therefore, a routine medical
check may pick this up. In some cases, the level of protein loss
can be very high, and fluid retention with ankle swelling may
occur. In other cases, kidney failure can develop, which may
give tiredness or sickness if kidney failure is very advanced.

What causes FSGS?

Basically, we do not know fully. There may even be several

different diseases that cause the same appearance in the
kidney. We think that the general cause of FSGS is
immunological. That is, the antibodies and white blood cells
we have to fight off infection cause some damage to our own
bodies by mistake. In FSGS, any damage is usually only in the
kidneys, so the rest of you should be all right. In a few cases
the condition seems to run in families, but this is uncommon.

F S G S
 Questions regularly asked by Patients

W h a t w i l l h a p p e n i f I h ave F S G S ?

The outcome is very variable, and you will need

to ask your specialist how things are likely to be
in your case.
The possibilities are:-

1 It may continue unchanged for many years, requiring

only regular check-ups with blood tests.
2 It may go away on its own in some cases.
3 If there is fluid retention with ankle swelling, this may
get worse.
4 In some cases kidney failure develops, leading to the
question of dialysis or transplantation.

F S G S
 W h a t a re t h e C o m p l i c a t i o n s o f F S G S ?

1 High blood pressure may develop. This damages the

kidneys and puts a strain on the heart and the rest of the
circulation. Therefore high blood pressure should be
treated vigorously.

2 If there is a lot of protein in the urine, the cholesterol level

may be very high, requiring a special diet and sometimes
cholesterol lowering drugs as well.

3 Kidney failure may sometimes occur. If so, it develops

slowly, so you need not be concerned about a sudden
change in your condition overnight.

4 There may be severe fluid retention in some cases, with

ankle swelling and shortness of breath. This can be treated
with tablets to drive more urine out from the kidneys.

F S G S
 Questions regularly asked by Patients

C a n F S G S b e c u re d ?

It is not an easy condition to treat, and sometimes we

rely on the treatment of blood pressure and
cholesterol. Water tablets may be used to treat fluid
retention. In some cases, a course of steroids
(prednisolone) produces a marked benefit, making the
condition go away. However, the steroid tablets may
need to be continued for some years in low dosage.

Drugs that affect the Immune System

If steroids fail, more powerful drugs that affect the immune

system may be effective. We have used 2 drugs called
cyclophosphamide and cyclosporin. Cyclosporin is
normally used to prevent the rejection of kidney transplant.
Steroids, cyclophosphamide and cyclosporin may have side
effects, so it is important to discuss the relative risks and
benefits of any treatment with your doctor before starting such
drugs. However, it may be worth a trial of such treatment if
there is a chance of preventing the need for dialysis treatment.

S t e ro i d s

Steroids are produced by the body and help control the way
it works. Manufactured steroids are used to treat many
diseases and conditions. If they are used as your doctor has
told you, they can be very effective. These are often
prescribed to children upon diagnosis of nephrotic syndrome.
This reduces kidney inflammation and helps children to keep
more protein (albumin) in their bodies. After between 1 and
2 weeks of treatment, the urine tests should show less or
no protein. This is a sign that the treatment is working.
F S G S
 S t e ro i d s ( c o n t i n u e d )

People taking steroids should carry their medication alert

card at all times. You should not stop having steroid
treatment without first talking to your doctor.
Here is a list of common side effects of steroids. You, (or your
child, if they have the disease), may experience some of them.
• Natural resistance to colds and coughs may be reduced
• Appetite may increase and you main gain weight.
• Facial flushing may appear or stretch marks may appear on
your skin
• A tendency to develop diabetes may be found.
• Blood pressure may go up.
• Mood swings or temper tantrums.
• Sickness or diarrhoea while taking steroids; if this happens,
call your doctor.
These side effects are all short-term and should disappear after your
treatment has finished. Your doctor will balance the benefits of your
treatment against the risk of side effects, or your illness. In most cases,
the combination of medicines, a healthy diet and rest will work. Your
treatment is working when there is no protein in your urine, any swelling
disappears and you are generally in good health.

Can I lead a Normal Life with FSGS?

The condition itself does not cause any specific symptoms or

pain. Fluid retention or kidney failure may affect day-to-day
life. Most patients with this disease, however, lead normal
lives and go to work, have children etc.
There will be some queries if you apply for mortgages or life
insurance, so plan ahead and be prepared to have your
doctors asked to supply a medical report. If you have any
problems with such matters, or want more information about
kidney diseases from the patient’s point of view, contact our
local or the National Kidney Patients’ Association.
F S G S
 Contact Numbers

Leicester Kidney
Patient Association (LKPA)
Phone: Renal Secretary
0116 258 4204
British Kidney
Patient Association
Bordon
Hants
GU35 9JZ
Phone: 01420 472021
or: 01420 472022
Fax: 01420 475831
Renal/Urology Bleepholder
Phone: 0116 249 0490
(via switchboard)
and ask the operator for the
‘Renal Bleepholder’
Further information can be
obtained from:
The National Kidney
Federation
6 Stanley Street
Worksop
Comments or Questions Notts, S81 7HX
Phone: 01909 487795
If you have any comment or questions, please Fax: 01909 481723
e-mail: nfk@kidney.org.uk
speak to us at the clinic, whilst attending for Helpline: 0845 601 0209
dialysis or ask your nurse. You may find it helpful www.kidney.org.uk
to note any comment or questions below:
(Price3/05)23050KR

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