On this page you will find further information that may be of use to patients with C3G, especially those that go on to receive Eculizumab.
Additional information can be viewed on our useful links page
Alexion fund a free service that allows patients on Eculizumab to receive their infusions in their own home. It may even be possible for you to have your infusions in your workplace or in school when appropriate
If you would like to find out more about this service or are having any issues or problems with it then please contact the Specialist Nurses at firstname.lastname@example.org.
Eculizumab interferes with your body’s ability to deal with the bacteria that can cause meningitis. The following measures will be taken to reduce the chances of you developing this disease whilst on the drug.
Your local team will ensure you receive the relevant meningitis vaccinations.
A blood test will be done to check your response to the vaccination. If needed you may be given a further booster dose.
Your physician will also prescribe long-term antibiotics. It is vitally important that you continue to take these for as long as you remain on Eculizumab.
A throat swab will be done to check if you are an asymptomatic carrier of the bacteria.
Once all precautions are carried out the risk of you contracting meningitis is extremely small but cannot be completely eradicated. You should make yourself aware of the signs and symptoms of meningitis and seek advice as soon as possible if you are concerned. Information on this can be found at http://www.nhs.uk/conditions/Meningitis/Pages/Introduction.aspx
The C3G Service produces cards that you can carry that provide information for health care staff on the risk of meningitis and the actions to be taken.
If you would like one of these cards then please contact us at email@example.com.
Genetics and C3G
A genetic fault in the complement system is found in only a few patients with C3G.
Patients with a suspected diagnosis of C3G could be considered for genetic testing, especially if there is a family history.
The genetics service at NRCTC can test a small number of genes in the complement system that have been linked to C3G.
Where a known genetic fault is identified, genetic screening can then be offered to family members such as siblings, parents or offspring. This can be done locally or individuals or families can receive an appointment to meet with physicians from the C3G Service in Newcastle.
At risk individuals will be given advice and counselling on what to look out for and how to seek assistance if required.
PatientView and RaDaR
PatientView is a system that takes information such as blood results from your local hospital’s computer system and allows you to view them from your home computer or electronic device.
Once you are registered for the service then other medical practitioners involved in your care, such as your GP, can also see your results.
It will also allow RaDaR to collect up to date information about your condition alongside results from other people with the same disease.
Further information can be found at www.patientview.org
RaDaR is the National Registry of Rare Kidney Diseases and is an initiative run by the Renal Association in the United Kingdom.
Its aim is to bring together information on patients with a rare kidney disease such as C3G, thereby improving our understanding of these diseases and therefore outcomes.
Further information can be found at http://rarerenal.org/radar-registry/
The C3G Service
The C3G Service is required to provide regular updates to NHS England on the progress and outcomes of all patients who are funded to receive eculizumab for recurrent C3G in the kidney transplant.
Under the shared care agreement between the local team and the C3G service, physicians will therefore be asked to provide regular patient updates including latest blood results.
In order to help this, your local physician will ask you to register for the following services. Registration is completely voluntary and will not in any way prevent your access to Eculizumab.
These registrations will allow the team at the C3G Service to receive reports detailing your latest blood results and will speed up the process of collecting this data.
Please be reassured that your personal data will not be shared with any other parties and all outcome measures will be anonymised in any reports generated.
Registration is not compulsory but will speed up the process of getting the required information to the C3G Service and reduce the number of requests we will have to send to your local physician.