Medications, vaccinations and travel in thalassaemia : University College London Hospitals NHS Foundation Trust

In our clinic, we prescribe medicines for people with thalassaemia. We may also need to give or monitor these medicines at the hospital. These medicines include:

hydroxycarbamide
sustanon and nebido
chelation agents, such as:
- desferrioxamine (Desferal®)
- deferiprone (Ferriprox®)
- deferasirox (Exjade®).

If you take large doses of strong painkillers, such as opiates, they must only be prescribed from one place. This may be at the clinic. This is part of national guidance and helps us to monitor their use. Your GP should prescribe your other medicines.

If your spleen has been removed, you should take preventive penicillin V (penicillin prophylaxis). If you are allergic to penicillin, you may be offered an alternative such as clarithromycin or erythromycin. You should take this for the rest of your life to reduce the risk of illness and death.

Penicillin is available as liquid and tablets. If you need the liquid version, the pharmacist will dispense it as powder. The pharmacist will teach you how to mix it with the right amount of water. The bottles of liquid expire after one week. So, if you need the liquid, we recommended that you get repeat prescriptions for eight to 10 bottles. We encourage children to learn how to take tablets as soon as possible, since they last longer.

The doses of penicillin are:

Up to one year of age	62.5 mg twice a day
One to four years of age	125 mg twice a day
Five years old and over	250 mg twice a day

Your doctor may also recommend that you take folic acid. Folic acid is a type of B vitamin, that helps your body to make new cells. People with thalassemia can become deficient in folic acid. This is because their red blood cells break down more quickly so can last less than a month. Red blood cells generally last about three months in people without a haemoglobin disorder.

The doses of folic acid are:

One month to four years old	2.5 mg once a day
Five years old and over	5 mg once a day

We recommend that you have the vaccines listed below. You can have them at your GP surgery. Please tell us when you have had them so that we can keep your hospital records up to date.

Some adults may have missed their childhood vaccines or had them in another country with a different schedule. Also, some vaccines were added to the schedule recently, so your child might not have had them yet.

Please discuss this with your GP so that they can bring you up to date with all the following vaccines:

Normal childhood vaccination schedule
Hepatitis B - from one year of age
BCG
Influenza (‘flu) - every year
Covid.

If your spleen has been removed, you also need:

Pneumovax - from two years of age and then every five years
Haemophilus influenzae type B (HiB)
Meningococcal ACWY
Meningococcal B.

Travel can lead to an increased risk of crises due to:

Blood clots (thrombosis)
Infection
Extreme tiredness (fatigue)
Dehydration
Climate change.

Air travel

Get up and walk around at least every half hour, drink lots of water and avoid alcohol.
You will not need extra oxygen if you are feeling well and in a pressurised cabin.
If you do need oxygen, you must arrange it with the airline yourself before the trip.
There is a possible increased risk of a blood blockage in your spleen (splenic infarct) from air travel. If you have pain in the left upper part of your abdomen, please tell your doctor before your travel.

Overland travel

Stay mobile, drink lots of water, and avoid extreme tiredness.

Antibiotics

Continue to take your regular penicillin. If you are allergic to penicillin, take something similar, such as erythromycin.
Ask your GP for a course of antibiotics in case you need them during your trip.
If you are unwell when you are away, you will need to see a doctor.
Seek treatment for dog and tick bites.
Seek early treatment for infections. If you have thalassaemia, your spleen does not work well and you are prone to infections. This risk is reduced with vaccines and penicillin but it is not removed completely.

Travel vaccines

Make sure you get all recommended vaccines for the area you are travelling to. For example, if you travel to an area which has an increased risk of infection, have meningococcal ACWY and hepatitis A vaccines.

For more information and advice, visit the Hospital for Tropical Diseases Travel Clinic. The clinic is in Mortimer Market near the University College Hospital Macmillan Cancer Centre. You will need to call to make an appointment (see the contact details section).

Malaria

People with thalassaemia are at risk of getting malaria, even if they’ve lived in or visited areas where malaria is common.
Use protective clothing, insect repellent, mosquito nets, and take malaria prevention tablets. You might need to start the medicine a bit earlier than usual to make sure you don’t have any side effects.
If you’re going to be far from medical help, make sure to take medicines for malaria with you.
Check if you have G6PD deficiency as some medicines may cause problems in people with G6PD deficiency.

Insurance

Get travel insurance that covers costs for bringing you back to the UK if you fall ill. You must declare your thalassaemia, or your insurance will not be valid. The UK Thalassaemia Society may be able to recommend insurers.

Haematology admin team:

uclh.redcelladminteam@nhs.net

Haematology clinical nurse specialists (CNSs):

uclh.redcell.cnsteam@nhs.net

Haematology advice line (office hours, adults and children):

020 3447 7359

Adult haematology advice line (out of hours):

07852 220 900

Paediatric helpline (out of hours):