The treatment can broadly be divided into three categories:

1) Emergency management of acute stone episode (see below)
2) Prevention with lifestyle measures and tablets
3) Surgery for treatment of stones when they form

Emergency Management:

Any casualty department should be able to manage an episode of acute pain (renal colic). The main problem occurs with patients whose stones are not visible on x-ray as they can be told that they do not have a stone. Because of the rare nature of cystinuria, the patient often knows more about the disease than the doctor treating them. If you know you have cystine stones and especially if they are not visible on x-ray it is a good idea to ask your specialist to provide you with a letter which states this. You can then show this letter to the doctors if you have to attend as an emergency. 

It might be that you need to be admitted for:
  • Assessment of pain.
  • To check renal (kidney) function, temperature and urine for infection.
  • Pain relief. Diclofenac (voltarol) is very effective pain relief. Opiates such as morphine are often used as well as required.
  • Investigation with KUB x-ray, intravenous urogram (IVU) or CT.
  • Treatment may involve a ureteric stent (plastic internal drainage tube from kidney to bladder) inserted in theatre or via a nephrostomy in the x-ray department.


A ureteric stent is inserted via the urethra (water passage) under general anaesthetic. It is usually a straightforward procedure and the stent allows urine to bypass the stone and reduces the pressure in the kidney. It is often necessary to go home with a stent in and come back for surgery to remove the stone - the  exact treatment will vary depending on the size and position of the stone.

You should be aware that a stent can cause irritation to the bladder. This will cause you to feel the urge to go to the toilet more often and can cause some pain in the bladder region. It is common to see some blood occasionally while the stent is in. You can also get some pain in the kidney area from the upper part of the stent. These symptoms are all perfectly normal. However, the stent can make you more prone to urine infections and if you feel unwell or have a temperature you should see your doctor who may prescribe some antibiotics.

Whilst stents in patients who don't have stones can be left inside for up to  3-6 months, in patients with stones this time should be much shorter. In cystinuria patients we would suggest that ideally this would only be for 2 weeks due to the risk that stone can start forming on them (encrustation). If you get a stent you should discuss this with your urologist. 

A nephrostomy is a tube that is inserted through the back directly into the kidney in x-ray using sedation. It is an alternative to a stent and is preferred in certain situations. Initially you will have a bag draining urine from the kidney (back) and usually this can be removed after a few days.

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