This website is intended for patients with X-Linked Hypophosphataemia and their families in the United Kingdom and Ireland, provided by Kyowa Kirin.
As you know, the aim of treatment for XLH is to increase blood levels of phosphate. This is because your kidneys allow too much phosphate to be passed from your blood into your urine. This is called 'phosphate wasting'. This section is about the decisions you might face when taking medication long term.
By prescribing medication to adults, specialist doctors aim to reduce bone pain, reduce the extent of soft bone disease (osteomalacia) and improve fracture healing or surgery recovery. In children, the aims are similar but doctors also want to improve the rate at which children grow and reduce their leg bowing.
With all medicines, there is a risk of side effects.
They may decide to stop the treatment, adjust your dose or prescribe another medicine to help. Together with your healthcare team you need to decide whether the benefits of treatment outweigh any potential side-effect risk.
There may be unexpected consequences if you stop taking a medicine, so it's important to discuss any concerns with your doctor if you are thinking about stopping treatment.
Reporting of side effects: If you get any side effects, talk to your doctor, pharmacist or nurse. This includes any possible side effects not listed in the package leaflet. You can also report side effects directly via the Yellow Card Scheme at: www.mhra.gov.uk/yellowcard
By reporting side effects you can help provide more information on the safety of medicines.
A common reason people stop is that they get fed up with taking medicines regualrly. This ’medicine fatigue’ is common among adolescents. Listening to non-medical opinions (especially on the internet) can also encourage people to stop their treatment.
However, as a person with XLH, you should know that the effects of low phosphate will continue throughout your life. So, in order to try to stay as healthy as you can, it’s important to keep taking your medicine as prescribed by your doctor. The only people to decide whether you continue or stop your treatment should be you together with your doctor or specialist.
Although XLH is a lifelong condition, you may decide to stop taking a medicine. It pays to be well informed when making decisions, so talk to your specialist doctor first. He or she may suggest why you shouldn’t stop, but ultimately it’s your choice. If you are convinced you want to stop taking a medicine your specialist doctor will be able to advise you on the best way to do this. Rather than stopping immediately you may need to reduce the amount you take each day over a period of time.
You should always tell your healthcare team if you're taking or have stopped taking any non-prescribed medicines, including pharmacy and complementary medicines, such as homeopathic or herbal treatments. This is because these may not mix well with your XLH treatment.
This website is specifically designed to provide information about X-linked hypophosphataemia (XLH).
Please note that this website does not replace the role of a healthcare professional and it is always recommended that you seek professional medical advice.
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KKI/UK/XLH/0334
Date of preparation: April 2022
This Kyowa Kirin website is intended for Healthcare Professionals (HCPs) involved in the care of people with X-linked Hypophosphataemia (XLH).
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