Ask the experts: Urinary issues in advanced MS


6 December 2024

Person with Advanced MS and a carer

Urinary tract infections, also known as UTIs or water infections, are a common problem in MS, especially for those people living with advanced MS. Urosepsis is a serious, life-threatening reaction to an infection in the urinary tract. Urosepsis can occur when an UTI is not treated, but it can also be caused by bowel incontinence, problems with bladder emptying or infections caused by catheter use.

The MS Trust Advanced MS Champion Programme is steadily building the numbers of specialists in advanced MS in the NHS. The current team of Advanced MS Champions meet regularly to support each other and discuss their work around the country. We took the opportunity to collect some UTI-related questions for them from our Facebook group for people affected by advanced MS. This group includes people with advanced MS and their partners, family members and carers. 

The Advanced MS Champions group discussed the questions and shared their advice in this article. They stressed that this is general information for self-management and prevention of UTIs or urosepsis for people affected by advanced MS. If you think you have a urinary tract infection, you should always seek help from your own GP or MS team.

What basic prevention measures should people take to prevent UTIs?

The short answer to this question is to ensure you are drinking enough fluids. 

The recommendation is to drink two litres of fluid a day. Although people often believe they are drinking enough, the reality is often different. Try keeping a daily fluid intake diary for two weeks, and keep track of exactly what and how much you are drinking. The goal is to gather an accurate picture of your fluid intake so just drink as much as you normally would. Don't make any changes at this stage.  

When you have completed your fluid intake diary, compare what you drink in a day to the recommended daily intake of two litres.  You might be further away from the two litre goal than you initially thought. You could use a two litre bottle for comparison to see what exactly what two litres looks like for you and how you can make this work in your daily schedule. 

If you need a little help to reach that two litre goal, jelly drops water sweets contain 20ml of liquid per sweet. Although these are not available through the NHS, you can order a trial pack for free.  

Other measures to prevent UTIs include avoiding fizzy drinks, citrus drinks and caffeine. Cranberry juice and lemon and barley drinks can help to ease a UTI, although be mindful of the amount of sugar in them, especially if you have diabetes. Lower sugar alternative versions of these drinks are available. If you use a a catheter, cranberry juice and lemon and barley drinks can be helpful in reducing sediment.

And finally, D-mannose is a dietary supplement which may help to prevent UTIs. It is a sugar that is similar to glucose and is found in foods such as broccoli, cranberries, apples and green beans. D-mannose may help prevent infections taking hold in your urinary tract. Studies into its effectiveness are still ongoing. Talk to your doctor or health team about whether this might be helpful for you and the right dose.

How quickly can UTIs become serious? When is it urgent to seek more help?

A urinary tract infection (UTI) may become severe quite slowly or really quickly. It differs from person to person.

If you are prone to getting urinary infections, get to know yourself and the signals your body gives you. Note the symptoms that you get when you suspect you may have a UTI and any symptoms you have if the UTI worsens. Listening to your body is important, as no two people’s experiences or symptoms will be exactly the same.  

A rule of thumb is that if urine is dark and smelly then a UTI could be present.

Don't ignore the symptoms that could mean the UTI is getting worse. A fever could be a sign that your body is struggling with an infection, which could indicate urosepsis.

When it comes to telling getting medical help, act quickly. Each healthcare service has different plans in place to support people who are prone to getting UTIs. Check with your team what your personal route for getting help with a UTI would be.

Some services put an emergency healthcare plan in place for certain patients. They may be given a short course of emergency antibiotic tablets to keep at home. When these people see their nurse to give a urine sample, they can take the tablets right away. This means there is time for the urine sample to be sent off and analysed, but the initial antibiotics will have prevented the UTI from becoming more severe. Once the results are back, additional antibiotics may be prescribed.

Some services may give their patients UTI self-testing kits, which include sample pots, dipsticks and instructions on how to take readings. This means that antibiotics or other remedies can be prescribed more quickly. 

Are there any problems with long-term antibiotic use? Do they become less effective over time?

Antibiotics will become less effective over time if they are used regularly. However, each healthcare service will consider the risk over the benefits for each person. Your health team may decide that antibiotic use is, on balance, the correct approach, as they may be needed to prevent a more severe infection taking hold.

Alternatives to antibiotics are available: 

  • Hiprex can be an effective alternative. It is an antibacterial medicine which is commonly used in the treatment of recurring UTIs.  
  • Topical oestrogen (creams, gels or pessaries) can be helpful for post-menopausal women in the treatment of UTIs. This can help to prevent UTIs developing.  

Find out more

Advanced MS: Read more about advanced MS

The Advanced MS Champions Programme: Read more on the AMSC role and programme

Urinary tract infections: More information on UTIs or bladder infections

Think you know how to spot a UTI?: Check you know what symptoms to look for.

Sepsis: NHS advice on sepsis management

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