* Shingrix brand shingles (herpes zoster) vaccine can be given to people taking immunosuppressants.   For more information, see question 11.

• a) Shingrix brand shingles vaccine (see question 9) is made from a protein on the herpes zoster virus. Because of the way it is made, Shingrix is not classed as either a live or an inactivated vaccine, so it can be given if you are already on immunosuppressant treatment. It can also be given before starting immunosuppressant treatment.

• Your household contacts can receive injected live vaccines without causing you problems.

• If a child in your household receives the live influenza nasal spray vaccine, you are not likely to be at risk of infection. The viruses in the vaccine have been treated so that they are unlikely to cause influenza. There have been no reported cases of illness or infection in immunosuppressed patients exposed to the nasal vaccine virus in the US, where this vaccine has been widely used for several years.
• Oral polio vaccine (not now routinely used in the UK) is not advised for your household contacts because contact with live vaccine passed out in their bowel motions may pose a risk to you.
• If your dog is to receive live intranasal Bordetella (‘kennel cough’) vaccine, see question 3.

You may receive inactivated vaccines while you are immunosuppressed

Inactivated vaccines include:

• Anthrax
• Cholera (oral)
• COVID-19
• Diphtheria
• Haemophilus influenzae (Hib)
• Hepatitis A
• Hepatitis B
• Human papillomavirus (HPV)
• Influenza (injection)
• Japanese encephalitis vaccine
• Mantoux test for tuberculosis
• Meningococcal vaccines
• Pertussis (whooping cough)
• Pneumococcal vaccines
• Polio (injection)
• Rabies
• Respiratory syncytial virus (RSV) (Abrysvo, Arexvy)
• Shingrix brand of shingles (herpes zoster) vaccine
• Tetanus
• Tick-borne encephalitis vaccine
• Typhoid (injection)

Although you can receive these inactivated products, they may be less effective because you are immunosuppressed.

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Q10. Should I have a flu injection?

Anyone taking immunosuppressants is recommended to have an annual influenza injection immunisation. Check with your GP practice if you will automatically be notified about this. If not, find out when the influenza vaccine becomes available at your GP practice (usually from September onwards in the UK) and make an appointment for your immunisation. See question 9: the nasal influenza vaccine is a live vaccine, and it is not suitable for people taking immunosuppressants.

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Q11. Should I be immunised against pneumococcus or shingles?

Yes:  pneumococcus and shingles

Pneumococcus

If you are to receive immunosuppressant treatment, or if you are likely to have systemic (oral) corticosteroids for more than one month at a dose equivalent to 20mg or more of prednisolone per day, you are at an increased risk of getting pneumococcal disease.

The best response to pneumococcal vaccine is obtained if it is given before you start treatment with immunosuppressants and/or oral corticosteroids, but it will still give you protection if you have the vaccine during your birdshot treatment.

Different pneumococcal vaccine immunisation recommendations apply in UK and in US.

The UK recommendation is for you to have a single dose of pneumococcal polysaccharide vaccine, also called PPV23 vaccine, to protect you against pneumococcal disease. This vaccine is also offered as a single dose to anybody in the UK aged 65 or over unless you have already received it.

Routine pneumococcal re-vaccination is not currently recommended in UK unless you have no spleen or if you have chronic kidney disease.

For US recommendations, see National Center for Immunization and Respiratory Diseases, Centers for Disease Control and Prevention, www.immunize.org/catg.d/p2015.pdf

Shingles (herpes zoster)

There are two types of shingles vaccines available.

a) Shingrix brand shingles vaccine (see question 9) is made from a protein on the herpes zoster virus. Because of the way it is made, Shingrix is not classed as either a live or an inactivated vaccine, so it can be given if you are already on immunosuppressant treatment. It can also be given before starting immunosuppressant treatment.

Shingrix has replaced Zostavax in the UK’s NHS national routine shingles immunisation programme.

From September 1st 2023, the UK national shingles immunisation programme includes:

• all adults aged 60 – 79
• adults aged 50 or over in certain categories, including being on immunosuppressant treatment and/or taking prednisolone 7.5 mg or more per day.

o   Shingrix is a two-dose vaccine, with the second dose usually given at least eight weeks after the first dose, though the second dose can be given four weeks after the first dose if your doctor thinks this is necessary.

o   Shingrix is licensed in the UK for use in adults aged 18 or over.

b)  Zostavax brand shingles vaccine is a live vaccine (see question 9) which should not be given to people already on immunosuppressant treatment. It may be given before starting treatment, but several weeks have to be left between having Zostavax and starting immunosuppressants.

o   Zostavax is a single-dose vaccine.

o   Zostavax is licensed in UK for use in adults aged 50 or over.

No information is available on the need in UK for booster doses of either Shingrix or Zostavax.

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Q12. Are there any foods or drinks that I should avoid because I am taking immunosuppressants?

It is important to eat a balanced and nutritious diet and take plenty of fluids to maintain your good general health while you are taking immunosuppressants. Some foods do carry a risk of infection, so they are probably best avoided if you take immunosuppressants. This applies particularly when you are eating away from home or in another country. These are:

• foods containing raw eggs , including mayonnaise
• raw or undercooked meats
• raw fish, eg, sushi
• undercooked poultry
• pâtés
• unpasteurised milk and cheeses
• shellfish

Also, check the patient information leaflet enclosed with your medicines for any special advice on foods or drinks to be avoided.

For example, if you are taking ciclosporin or tacrolimus, eating grapefruit or drinking grapefruit juice affects the blood levels of these medicines in an unpredictable and prolonged way. To avoid these problems, it is best not to consume either grapefruit or grapefruit juice at all if you are taking ciclosporin or tacrolimus.

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Q13. Can I continue with exercise and sports now I’m taking immunosuppressants?

Yes. Coping with your birdshot uveitis and its treatment can be stressful. The exercise and relaxation tips here may be things you are already doing. If so, you should aim to continue them, but if not, they are worth considering doing, as they may help you to regain and retain a sense of balance in your life as well as contributing to your good health.

• Make time for regular exercise. This could be anything from a walk, simple stretching exercises, or joining a movement and exercise class.

• Sporting activities can generally be enjoyed without problems. Avoid extreme exercise, such as weightlifting with very heavy weights, bungee jumping and similar high acceleration activities, as these may put your eyes at risk of damage.

• Make time to include some relaxation in each day. As well as the more obvious relaxations of favourite hobbies or pastimes, this might be the time to try yoga or meditation exercises which may benefit your immune system as well as helping you relax.

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Q14. How does being immunosuppressed affect my chances of starting a family?

Some immunosuppressants should not be taken by men or women who are trying to conceive, nor by women during pregnancy or breastfeeding. Ask your doctor for advice.

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Q15. Why do I have to have so many blood and urine tests?

These are done to check that the immunosuppressant is reducing the activity of your immune system satisfactorily, but that it is not causing unwanted effects on your liver, kidneys and blood cells. Testing is particularly important at the start of your treatment, when the tests may be very frequent to check how you are beginning to respond to the medication.

If you are taking ciclosporin or tacrolimus, you will have drug blood level tests done. These are to make sure that your dose of these medicines is right for you. These blood tests are called ‘trough level’ tests, which means they measure the blood level of the medicine before your next dose is due. Your clinic will give you instructions on when to take your medicine on the day when a ‘trough level’ blood test is due.

You have to take charge of your testing and make sure your tests are done regularly according to your doctor’s instructions. Depending on where you live, you may have to arrange some or all of your routine tests through your GP, making sure that the results are available for you to take to your next eye clinic appointment.

If, for whatever reason, you find you cannot keep a test appointment, contact your test centre as soon as possible to discuss this and to arrange another appointment.

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Q16. How long will it take for the immunosuppressants to work?

Most immunosuppressants take several weeks to reach their full effect in the body, and the effects take several weeks or months to wear off when the medication is stopped. This is why it is important not only to tell anyone treating you that you are taking corticosteroids or immunosuppressants, but also to tell them after you stop taking them, as your body may still be recovering its immune response to infections. See questions 20 and 21.

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Q17. What side-effects are likely with my immunosuppressants?

Side-effects are a possibility with any medicine, and you may be concerned about the list of potential side-effects in the patient information leaflet supplied with your medicine. The list may be long because any side-effect that has been reported has to be mentioned in the leaflet. Many reported side-effects are very rare.

Though the expected benefits of your immunosuppressant treatment have to be balanced against any adverse effects, people react in different ways to the same medicine.

If you think that your immunosuppressant is causing you a problem, particularly if you notice any unexplained bruising or bleeding, contact your doctor for advice.

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Q18. How do I get repeat supplies of my immunosuppressants?

You may receive hospital prescriptions for your medicines. However, if your GP is prescribing your medicines, your community pharmacist is likely to have to order them specially for you, and there can be delays in medicine supply chains. This is why it is important to obtain and present your repeat prescriptions for dispensing in plenty of time so that you do not run out of medicines.

Immunosuppressants are used for treating a variety of conditions, so it is worth letting your pharmacist know that you are taking immunosuppressants because of your birdshot uveitis.

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Q19. Any other advice about my medicines?

Read the patient information leaflet supplied with your medicines, and keep a copy in your purse or wallet. You can then refer to it if you are buying over-the-counter medicines, including herbal or complementary medicines and food supplements, as some purchased products may not be suitable for you to take with your immunosuppressants. Ask your pharmacist for advice.

You should always mention your immunosuppressants to your doctor whenever a new medicine is being prescribed or a current medicine is discontinued. Show your patient information leaflet to your doctor so that they can check for any possible interactions with your treatment. Some medicines must not be taken with immunosuppressants, and this varies according to which immunosuppressants you are taking.

In the UK, letters from hospital doctors to your GP detailing your treatment and medication are now usually scanned into your GP’s patient record system. However, your GP repeat medication record may not include the medicines prescribed or recommended by the hospital doctor unless your GP is actually issuing your repeat prescriptions for those medicines.

Because of this, you will find it useful to keep your own simple record of all the medicines you take or use, whether prescribed by a hospital doctor or your GP, or purchased by you. This record should include the medicines’ strengths and doses. Keep this record in your purse or wallet with the patient information leaflets from your medicines, and keep the record up to date. You can then show your record to anybody who needs to know exactly what medicines you are currently taking or using.

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Q20. Should I tell my dentist that I am taking immunosuppressants?

Yes. Because immunosuppressants alter the activity of your immune system against infection, it is important to take good care of your mouth and teeth. Visit your dentist regularly every six months, tell them that you are taking immunosuppressants, and let them know which one(s).

Your dentist will then know to keep a special watch for any signs of infection in your gums, mouth and teeth.

Some immunosuppressants, for example, ciclosporin, methotrexate and mycophenolate, can cause swollen gums as a side-effect, so if you are taking these medicines, your gums will need special care.

You do not need to receive preventative antibiotic treatment for routine dental work while you are taking immunosuppressants. However, if you need to receive antibiotics for treating a dental problem, remember to show your dentist the patient information leaflets from your medicines in case there are antibiotics that you should not receive.

Let your dentist know if you change, taper or stop your immunosuppressants. You will still need special dental observations for several months after stopping immunosuppressants.

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Q21. What about other therapies and treatments?

Tattooing has been linked to the development of some kinds of uveitis. Tattooing may also cause inflammation in the body if you are taking immunosuppressants. The reasons for these reactions are not properly understood. They could involve either a reaction to tattoo ink or the increased chances of developing an infection after a tattoo if you are taking immunosuppressants. Because of this uncertaintly, it could be wise not to have tattoos done if you have birdshot.

Other treatments which involve needles or skin removal are a potential source of infection for anybody, but the treatments listed below pose a higher risk to you when you are immunosuppressed. Always tell your therapist that you take immunosuppressants, and also if you are tapering or have recently stopped them.

In the UK, treatments such as:

• acupuncture
• body piercing
•  podiatry (chiropody)
•  electrolysis

should all be performed by registered therapists using sterile, single-use equipment. If you have any doubts about a therapist or their equipment, do not proceed with treatment.

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Q22. What about sunbathing and sunbeds now I’m taking immunosuppressants?

When you are taking any immunosuppressant, it is even more important than usual to take sensible precautions to protect yourself from the effects of the sun on your skin, whether you are in the UK or in sunnier countries. This is because your skin will be more sensitive to sun damage. The risk of sun damage, including the development of skin malignancies, is related to the intensity and duration of your immunosuppression rather than to any specific immunosuppressant.

Follow the Australian ‘slip, slop, slap’ sun protection advice, even if you have skin which tans easily:

•  slip on a blouse or shirt – to cover your skin as much as possible against the sun
• slop on a sunscreen – use a high factor sunscreen (SPF 30 or higher) and re-apply it regularly
• slap on a sunhat

You should not use sunbeds.

Contact your doctor if you notice any changes to your skin, such as the development of moles or warts.

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Q23. Any special advice about travelling, particularly travelling abroad?

Many of the precautions suggested here for the immunosuppressed traveller are things which you would normally consider doing when travelling. However, some of them may be new to you. Following these tips should help you to stay as well as possible and enjoy your travelling.

Before travel

• Contact your doctor to discuss what immunisations, antimalarial protection or other medicines may be needed for the areas you intend to visit.
• Airport X-ray machines and Humira/adalimumab biosimilars: well before your date of travel, ask your home delivery service for a letter stating that these medicines should not go through airport X-ray machines. Show the letter to airport staff. This is because it is not known if the X-rays might change the chemical composition of Humira/adalimumab biosimilars.
• See question 9 for which immunisations you may or may not receive when you are taking immunosuppressants.
• Some immunisations have to be given several weeks or months before travel, so allow enough time for this to be done.
• If you are travelling to an area where yellow fever is a risk, your doctor may give you a medical exemption letter because you cannot have yellow fever vaccine. However, some countries may not admit you without proof of actual immunisation, and when you travel from a yellow fever risk area to another country, immigration officials are legally entitled to quarantine you. Seek advice before booking your travel.
•  Check with your doctor that any malarial preventative medications recommended for the area you intend to visit are suitable for you to take with your immunosuppressants.
• Useful information can be found on the websites

 ~ www.fitfortravel.nhs.uk

~ www.travelhealthpro.org.uk

Medicines tips

• Pack them in your hand luggage in case your checked-in luggage goes astray.

• Take extra medication with you in case there are any delays to your travel.

• Take a list of all your medications, strengths and doses with you, and the patient information leaflets, in case you require medical treatment or need to buy medicines while you are away (see question 19).

• If you are travelling across different time zones, you will need to work out how best to adjust your medication times to the country you travel to, and then move the times back when you return.

Planes, trains and coaches

• If you are sitting under an air vent, either turn it off or direct it away from your face so that you reduce your exposure to recirculated air and airborne infections.

• On flights, keeping well hydrated with regular non-alcoholic drinks helps counteract the drying effect of low-humidity cabin air on your nose and throat, which are your first line of defence against airborne infections.

• For long-haul flights, consider wearing a face mask for protection.

Food and drink

Use all the tips (see question 12) plus:

• Follow the traditional rule of ‘boil it, peel it, cook it, wash it or forget it’.

• Bottled carbonated (fizzy) mineral water is likely to be safer than still mineral water because the presence of bubbles shows that the bottle has not been previously emptied and refilled with local tap water.

• Use bottled water when cleaning your teeth.

• Avoid street food likely to have been exposed to flies.

• Avoid salads, as they may have been washed in unsafe water.

• Avoid food that has been kept warm.

• Avoid ice in drinks.

• Avoid swallowing water while swimming.

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Q24. Anything else I should know?

Only to emphasise what was said at the beginning – the most important thing for you to remember is that although you are taking immunosuppressants, your immune system is still working. Your body can still fight infections.

You now know some simple precautions you can take to reduce your exposure to various common sources of infection. You now also know when you should seek advice if you do develop an infection, and you have some useful lifestyle tips. By putting this information into practice, you should feel more confident about managing your treatment, your health and your lifestyle.

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