Hydroxycarbamide Pathway

Why hydroxycarbamide may be considered:

Your views should be listened to and a joint decision made by you and your medical team
Your medical team will clearly outline the evidence for how hydroxycarbamide works, how it may help you and any potential side effects
You should get the chance to explore your thoughts and feelings about hydroxycarbamide
You should have an opportunity to discuss any other treatments available to you and be given time to consider your options

You should be advised of the need for contraception whilst taking hydroxycarbamide. The possible options should be discussed with you
Sperm analysis and sperm storage should take place prior to starting hydroxycarbamide

You will have a blood test to check your baseline kidney and liver function as these will need to be monitored whilst you are on hydroxycarbamide

You should be given clear contact details for your medical team in case of problems
Hydroxycarbamide is usually taken as a once aday tablet/capsule(s). Your starting dose will be based on your weight. A member of your medical team should go through in detail how to take hydroxycarbamide and how best to store it at home
A plan should be agreed between you and the medical team for the best way of getting regular blood tests done to monitor your blood counts, liver and kidney function whilst taking hydroxycarbamide
It may take a number of months after starting hydroxycarbamide for you to start to notice an improvement in you sickle symptoms

There are some potential side effects of hydroxycarbamide you should look out for and it would be important to contact your medical team if you have any concerns:

–Common side effects stomach upset (tends to settle), rash, darkening of the skin/nails, hair loss, mouth ulcers

– Uncommon side effects infections, abnormal kidney and liver tests, bleeding/bruising, skin ulcers –

This information should also be provided in a more detailed written form either by paper or email

After you start hydroxycarbamide, the dose will be increased over a period of weeks to months with the aim of increasing the level of fetal haemoglobin measured in the blood but not reducing your blood counts (haemoglobin, white blood cells and platelets) too much
You will be asked to have a blood test two weeks after starting hydroxycarbamide and then after every dose change. You should be informed of the results and any suggested changes
Any changes to your blood count will be identified by your blood tests. If one or more of your blood counts drops too low, the hydroxycarbamide may be paused and/or restarted at a lower dose

You will be asked to have a blood test every 2-3 months
If you or your partner are planning a pregnancy it is important you speak to your medical team as early as possible. Your hydroxycarbamide will need to be stopped and an alternative medical plan will need to put in place for you
If you find out you are pregnant whilst on hydroxycarbamide you must contact your medical team immediately. It will to be suspended and an alternative plan put in place
Your progress with hydroxycarbamide will be reviewed at each hospital appointment along with the need for additional treatment alongside hydroxycarbamide or the need to discontinue it

You must follow the plan you and your medical team have made if you become unwell or develop a fever
Hydroxycarbamide can take time to work
Hydroxycarbamide is used for other medical conditions including blood cancers. It has also been found to be a good treatment for sickle cell disorder. Please do not be alarmed if you find reference to its other uses online
There is no evidence that hydroxycarbamide increases the risk of those with sickle cell disorder developing cancer over time
If you are struggling to take the tablets/capsule please speak to your medical team as other forms of hydroxycarbamide may be available
If you forget to take your dose of hydroxycarbamide, take it as soon as you remember, the same day. If you remember the next day, do not double the dose, just continue with your normal prescribed dose and update your medical team if you are struggling to take it regularly
Keep the tablets/capsules somewhere secure, out of the reach of children or pets
Most vaccines are fine to have whilst on hydroxycarbamide, however, some live vaccinations may be less appropriate. It is important to let the vaccinator know you are on hydroxycarbamide so they can assess if it is safe for you to have the vaccine
Whilst taking hydroxycarbamide, your skin may be more sensitive to the sun. It is therefore important to protect it by using sunscreen on exposed skin each day