An XLH patient deep in thought

Medicines

Phosphate and calcitriol are prescribed to reduce bone pain and osteomalacia and improve healing. This is about decisions you might face when taking phosphate and calcitriol long term.

Goals of treatment

By prescribing phosphate and calcitriol 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.

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What about side effects?

With all medicines, there is a risk of side effects.

If you get a side effect, you should tell your healthcare team immediately

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.

If you stop taking a medicine you might get side effects. For example, if you stop taking calcitriol but continue to take phosphates you then run the risk of developing hyperparathyroidism. This is a condition that can lead to kidney problems or high blood pressure. It’s one of the reasons why phosphates and vitamin D substitutes are always prescribed together and why your specialist doctor should check your parathyroid gland with regular blood tests.

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Reasons people stop their medicines

A common reason people stop is that they get fed up with taking a lot of medicines each day. 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 and your specialist doctor.

If you're having trouble with the number of pills and tablets you need to take, talk to your pharmacist. There are many ways in which they can help. Perhaps having medicines in a liquid form or using a pill box might be helpful.

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What if you decide to stop?

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.

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What about other medicines?

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.

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XLH Link

This website is specifically designed to provide information about X-Linked Hypophosphatemia (XLH) and assist with the correct assessment of the condition.
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