Introduction
Your renal team have identified that you are anaemic and as part of the treatment for this, it has been recommended that you are treated with a medication called Erythropoietin Stimulating Agent. You may also hear it called EPO, Aranesp, Darbepoetin or Neorecormon.
This leaflet aims to:
- Explain to you and your family what this treatment is and why it is needed
- Explain how the injections are given and who can give them
- Explain the ordering of the injections and the prescribing process
- Provide information about the monitoring involved
- Record details of your treatment
The chronic kidney disease (CKD) team will explain the information in this booklet before you start your treatment.
What is renal anaemia?
Patients with kidney disease often develop renal anaemia. Renal anaemia is caused by a reduction in the number of red blood cells in the body. Red blood cells are important as they contain haemoglobin (Hb) which carries oxygen around your body. Your body makes red blood cells in response to a hormone called Erythropoietin. This hormone, Erythropoietin, is made in the kidneys and encourages your bone marrow to make more red blood cells.
When you have kidney disease or kidney impairment, you may not be producing enough Erythropoietin.
If anaemia remains untreated, symptoms can occur which can affect quality of life, these include:
- Tiredness/lack of energy
- Shortness of breath on exertion
- Feeling cold
- Lack of concentration
If anaemia is not treated, your heart may also become bigger because it has to work harder to deliver oxygen around the body.
What is the treatment for renal anaemia?
There are two medications you may be given to treat your renal anaemia:
- Iron
- ESA
Iron
If your iron levels are low, you may be given an iron infusion or iron tablets. Iron is an important part of haemoglobin which carries oxygen around the body. More information will be provided by your renal team if you are prescribed iron.
ESA
ESA is a medication used to replace the Erythropoietin that your kidneys would normally make. By giving you ESA, we aim to increase the number of red blood cells and haemoglobin in your blood.
How will ESA be given?
Unless you are on haemodialysis, ESA is given as a subcutaneous injection. This means, the medication is injected into the subcutaneous layer (the fatty tissue) just under your skin.
The injection is usually given into the abdomen, in the area either side of your belly button as this is easy to access and provides an adequate area to vary the injection sites.
You can either choose to inject yourself, with training provided by your renal team or you can choose for a carer, practice nurse or district nurse to give this injection to you. Do not try to inject yourself if you have not been trained.
Your blood pressure will need to be checked each time before you have your ESA injection.
ESA injections are usually given once every 2 weeks however if you have been started on this medication in hospital, you may have been prescribed it once a week. You will need a sharps bin to dispose of the injection after use. The sharps bin will be provided to you with the delivery of injections.
What are the side effects of ESA?
As with all medication, there is a risk of side effects with ESA treatment.
Common side effects include:
- An increase in blood pressure
- Pain/stinging around the injection site
- Rash and/or redness of the skin
- An allergic reaction or flu like symptoms
- An increased risk of a stroke
Uncommon side effects include:
- Bruising and bleeding at the injection site
- Blood clots
- Convulsions (fits or seizures)
Rare side effects
Blistering skin rash - If after starting treatment with ESA, you experience a red and blistering rash which can involve the skin peeling, ulcers developing in the throat, mouth, nose, eyes and genitals then this must be reported immediately. These symptoms can follow a fever or flu-like symptoms. Stop using ESA straight away and seek medical help or contact your GP.
A full list of the side effects can be found in the information leaflet inside the injection box. The CKD team will be monitoring your ESA treatment closely and are happy to discuss any concerns you have about side effects. You can also report side effects directly via the website www.mhra.gov.uk/yellowcard
How will I get my ESA injections?
Unlike other medications, your GP is not licenced to prescribe ESA injections. The injections are prescribed and monitored by the hospital.
We will arrange for your ESA to be delivered to you at home by a company called Fresenius. Fresenius will contact you to arrange a delivery time and date.
One box holds 4 injections and you will need to re-order further injections. Please see the re-ordering information.
How do I store my ESA injection?
ESA injections should be kept in the fridge as soon as possible after being delivered. Your injections should remain in the fridge until needed. You can remove your injection from the fridge 30 minutes before your injection is due to be given.
Should you find the ESA injections have not been stored correctly, please contact the CKD team for advice.
What monitoring will I need?
It will take some time for your body to make new red blood cells and you may not notice any effect before 4 weeks.
We will use a blood test called a full blood count (FBC) to measure your haemoglobin level. From this, we can see how you are responding to the ESA injections and adjust the dose if needed. The National Institute for Health and Care Excellence (NICE) guidelines for anaemia management (2021) recommend aiming to achieve and maintain a haemoglobin level of between 100 and 120g/l.
We can arrange your blood tests at one of our kidney care centres and the blood test will need to be done every 4 weeks. The contact number to make blood appointments is 0161 206 5330.
You will need to have your blood pressure monitored before you have your ESA injection, this can be monitored either by yourself, your carer or nurse. If your blood pressure is 180/100 or higher, do not give your injection and contact the CKD team for advice.
How do I order my ESA injections?
You need to re-order your next prescription of ESA injections from the hospital.
It can take up to 4 weeks for the renal team to check your blood results and issue a new prescription. We recommend you order your ESA injections when you have 1 month supply remaining. If you are on fortnightly injections, this will be when you have 2 injections remaining.
Please contact the ESA order line on 0161 206 0807 or by email on EPO2@nca.nhs.uk
When the new prescription is issued, it is checked by the hospital pharmacy before being sent to the company Fresenius, mentioned later.
Please note: The renal team are unable to issue your next prescription if you have not had your blood test taken within 4 weeks of you ordering the ESA injections. We may send you a letter in the post to remind you.
ESA dose change
The renal team may advise changing the dose or the frequency of ESA injections after reviewing your blood results.
A letter will be sent in the post to confirm any changes. The letter may instruct you to use up your existing supply of new injections before going on to the new dose.
How do I dispose of my sharps bin?
Once your sharps bin is full, you can lock it by closing it fully. You will be unable to open it again after it is locked. The sharps bin can then be brought to one of the kidney care centres. Fresenius will supply a new sharps bin when required.
What happens if I miss a dose of ESA?
If there is an occasion where you miss a dose of ESA, do not worry as you are not in immediate danger.
If you have missed a dose, you should take your ESA injection as soon as possible and continue with your next prescribed dose. Do not take a double dose to make up for missing a dose.
What do I do if I am admitted to another hospital?
If you are admitted to another hospital, your ESA treatment should continue. Please inform the ward staff that you are being treated with ESA for renal anaemia. If the ward staff have any questions, they can contact the CKD team.
Is there an alternative to ESA treatment?
An alternative to ESA treatment is regular blood transfusions. Blood transfusions carry their own risk as it is possible to have a reaction to the donated blood. If you receive many blood transfusions, this may affect your chances of receiving a kidney transplant in the future. This is because your body may develop more antibodies through the donated blood.
There are new tablets called HIF-Stabilisers which treat kidney anaemia and have recently been approved for use in the UK for some patients. You would need to take a tablet several times a week instead of injections, so some people may prefer them. It is still important to monitor blood tests and blood pressure closely as they have similar side effects to the injections. If you would like to find out more about this treatment, please contact the CKD team on 0161 2061882.
What are the benefits of ESA treatment?
We hope you will start to feel better within 6-8 weeks of starting ESA treatment. The symptoms of tiredness and feeling cold should hopefully improve.
By treating your renal anaemia, your heart will not have to work as hard to deliver oxygen around your body. This will have long term benefits to your health.
Does ESA treatment make my kidneys get better?
No, ESA treatment does not make your kidneys get better, it treats the anaemia caused by your kidney problems.
Where can I get more information?
If you have any questions or would like to discuss anything in this leaflet, please call the CKD team on 0161 206 1882.
Initiation and Monitoring Diary
In order to treat your anaemia you have been prescribed: (ESA Brand):
(ESA Dose):
(ESA Frequency):
Date of first injection:
Date and day of next injection:
Given by:
☐ Staff
☐ CKD Team
☐ District Nurse
☐ Practicce Nurse
☐ Other
Date of blood test (FBC/BP):
Bloods to be taken by:
☐ Practice Nurse
☐ District Nurse
☐ Renal Clinic
☐ Other
Reminder
- You should take your blood pressure before having you ESA injection. If your blood pressure is 180/100 or higher, do not give the injection and contact the CKD team
- You will need to have a blood test (FBC) every 4 weeks from the date of your 1st injection for the first 6 months
- After the 6 months is over, the blood tests may be reduced to every 8 weeks but this will be assessed on an individual basis
- You will need a blood test to check your iron levels every 3 months (Ferritin and Iron saturations)
Date of Review: July 2024
Date of Next Review: July 2026
Ref No: PI_M_1258 (Salford)