You have been prescribed a medicine called interferon alpha. This is used to treat cutaneous T-cell lymphoma, as well as a number of other conditions.
It is similar to a protein found naturally in small quantities in the body, but when used as a medicine for cutaneous T-cell lymphoma, interferon alpha can boost the immune system and help the body to fight cancer cells, slowing down or stopping them from dividing. Interferon alpha is not a cure for your condition, and works best at keeping you in remission, rather than treating a flare-up of your disease. There are different types of interferon alpha – your doctor will decide which one is best for you. The treatment chosen might not be licensed for your condition.
What tests do I need before treatment?
Before starting treatment you will have blood tests to check your full blood count, kidney and liver function. Your doctor will consider any other medical conditions you may have to assess whether interferon alpha is suitable for you. Blood tests will typically be repeated every four to six weeks while you are being treated with interferon alpha.
How do I use interferon alpha?
Interferon alpha is given by subcutaneous injection (an injection just beneath the skin), usually once weekly. You can be taught to give yourself the injection or a relative/ carer can do this for you if you prefer. Alternatively, the GP practice nurse or district nurse will be able to give this for you. Interferon alpha is given via a special injection into your thigh, upper arm or abdomen, and comes ready to use. If you forget to use your injection, do not try to catch up or use a double dose – just continue with your normal dose when it is next due. Please contact the specialist nurse or any member of the Skin Lymphoma team if you are unsure about how to use your injection pen or what dose to use.
How long will I need to use interferon alpha for?
Interferon alpha can be continued indefinitely, as long as it continues to work for you. There may be times when you wish to have a break from treatment (for example if you are pregnant; see ‘Other important information’ below), or treatment may be stopped if side effects of the medicine interfere with your normal daily routine.
What are the common side effects?
Side effects are often worse when first starting the medication. They can improve over several months as your body adapts to having higher levels of interferon than normal. Please discuss any side effects that you may have with the doctor or nurse. The most common side effects include:
Flu-like symptoms
These may start two to three hours after the injection and include muscle aches and pains, raised temperature and chills. These effects do not usually last long, and may be less noticeable if you use your medication just before bedtime.
Tiredness
This is a very common side effect of the treatment. You may need to take more rest than usual. If you are feeling drowsy, tired or confused you should avoid driving or operating machinery.
Nausea/vomiting/loss of appetite/diarrhoea
These side effects may be improved with an anti-sickness or anti-diarrhoeal medicine, so discuss these with your doctor or nurse.
Hair thinning
Effects on hair loss are temporary and hair usually grows back normally when treatment is stopped.
Effects on the blood
Lower number of red blood cells or anaemia (the signs include feeling tired, pale skin and being short of breath); lower number of platelets (the signs include small bruises on the body or bleeding); lower number of white blood cells (the signs include increased number/ severity of infections or unexplained fevers). If you notice these signs you should contact your doctor to bring forward your next blood test to check for this. These effects are temporary and usually return to normal after stopping treatment.
Injection site reaction
This may be reduced by changing the injection site each time. If you develop a more widespread rash, this may be an allergic reaction and you should contact your doctor straight away.
Effects on blood pressure
Blood pressure may be high or very rarely low;theseeffects are temporary and will go back to normal on stopping treatment.
What are the less common side effects?
The frequency and severity of the side effects listed below may vary depending on the product that you have been prescribed. If you experience any other side effects, including those listed below please discuss them with your doctor or nurse. This can be done either at your next appointment or if necessary you can contact us between appointments using the details given at the end of this leaflet.
Uncommon side effects (affecting less than 1 in 100 people) include depression and pins and needles in the hands and feet.
Rare side effects (affecting less than 1 in 1000 people) include impotence, intestinal bleeding, kidney or liver abnormalities, convulsions or coma. Sometimes people using this treatment experience suicidal thoughts – please contact your doctor immediately if this happens, or if you or anyone else notices a change in your mood.
This is not a complete list of side effects for this medicine; the package leaflet supplied with your medicine will give you more information.
Other important information about using interferon alpha
You should avoid becoming pregnant or fathering a child whilst using interferon alpha, as the effects on a developing baby are uncertain. You and your partner must use an effective form of contraception (birth control) whilst you are receiving this treatment; your doctor can discuss suitable options with you. If you are pregnant, think you may be pregnant, or are planning to have a baby, you should not use interferon alpha unless your doctor advises you to.
It is not known whether interferon alpha passes into breast milk, therefore you should discuss with your doctor whether it is best for you to temporarily stop treatment if you want to breastfeed.
Interferon alpha may affect your fertility by affecting the menstrual cycle in women. Effects on fertility are usually present only while using interferon alpha, and should return to normal after stopping treatment; but occasionally it can be permanent. Please discuss this with the doctor or nurse if this is important to you, or may be relevant in the future.
Even if you think your fertility is affected, a reliable form of contraception should still be used.
Interferon alpha treatment is sometimes combined with other treatment such as bexarotene. This may cause additional side effects and will be discussed with you by the doctor or specialist nurse if appropriate.
Follow-up and contact details
You will be offered follow up in the long term in the CTCL clinic in Newcastle upon Tyne. If you are concerned or your condition changes between appointments then please contact us for an earlier appointment by contacting the consultant dermatology secretaries on 0191 282 4340 or specialist nurse team on 0191 282 4110.
Further Information
Lymphoma Association
Freephone helpline 0808 808 5555
Useful websites
If you would like further information about health conditions and treatment options, you may wish to have a look at the NHS Choices website at www.nhs.uk. On this website there is an information prescription generator www.nhs.uk/ips which brings together a wealth of approved patient information from the NHS and charity partners which you may find helpful.
