People with RHD may be enrolled on an RHD register, to help provide regular antibiotic injections and other clinical follow up. Having regular antibiotics to prevent recurrences of rheumatic fever is known as being on ‘secondary prophylaxis’. Most people have injections of a long acting antibiotic called benzathine penicillin G (BPG). BPG can be called different names when it is made by different companies.
An Australian video (below) explains why BPG injections are needed and how they are given. The video uses the name Bicillin-LA™ when talking about BPG. More information about the research and evidence for secondary prophylaxis is also available online.
You may want to ask the register staff (or other health professionals) some questions:
- Where do I go to have my injections?
- How often should I have the injections?
- How will I know when the next injection is due?
- What should I do if I miss an injection?
- How long will I need to be on injections?
- What if I am going to be away when my injection is due?
- How can I update my contact details on the register?
The register may also know about support groups, organisations or other people in your area living with RHD. You can find more information about support groups activities worldwide on our Atlas of RHD. If there are no activities in your area you may want to start your own event or activity. If you do we would love to hear about it, please email to let us know!
Some people find it difficult to remember when their antibiotic injections are due. You can help remind yourself by:
- Setting a reminder in your phone
- Writing a note on your calendar
- Asking the clinic for an appointment card
- Having your injections when it is a full moon!
“I never, ever, ever forget to have my monthly penicillin injections. I put a reminder on my phone for the next one when I go for my needle.”
Having injections can also be a little bit scary or painful. Some tips might help…
- Take a friend or family member with you who can talk and distract you through the injection
- Try and relax during the injection - most injections are more painful if given into tense muscle
- Ask the health worker to give the injection slowly (over 5 minutes)
Some people feel weak, dizzy or faint during injections. Make sure you tell the health worker if this happens to you. It may be best to have your injection while you are lying down. A very small number of people are allergic to penicillin and may have a serious allergic reaction during a BPG injection. You should tell the health worker immediately if you are finding it hard to breathe or have throat swelling.
Keeping healthy with RHD
There are lots of things you can do to stay healthy while living with RHD…
Know the signs of ARF recurrence
Sore joints, fever and feeling short of breath may be a sign of a ARF recurrence. You should see a doctor or a health worker to have treatment and begin medicine to prevent further recurrences.
Look after your teeth
Heart valve infections can be caused by germs that live in the mouth. People with RHD have an increased risk of heart valve infections. Keeping teeth and gums health reduces this risk. Teeth should be brushed with fluoride toothpaste twice every day.
Have all your immunisations
People with RHD may be more at risk of complications from other infections. This risk can be reduced by having all the immunisations recommended by your doctor.
Know when to seek help
Health care workers, doctors and specialists can help you live well with RHD by managing symptoms and preventing complications. It is important to seeing a health worker when you have symptoms of sore throat, sore joints, breathlessness. You should also see a health worker if you are pregnant or planning to become pregnant.
Eat healthy and stay active
People with heart valve damage from RHD also need to keep a healthy heart muscle. Heart muscle can be damaged by heart attacks and blockages in the heart arteries. A healthy lifestyle with fruit and vegetables and 30 minutes of exercise most of days of the week can reduce the risk of heart attack.
Malaki* was eight years old when he was diagnosed with RHD in Samoa. His family received education from the dedicated RHD nurse and he is careful to take his monthly penicillin injections to avoid needing heart surgery. Today, he remains healthy and plays rugby for his school team. Samoa has spent up to 15% of its entire health budget sending patients abroad for heart surgery - many cannot go due to lack of funds. Malaki makes sure to visit his doctor regularly to reduce his chance of requiring surgery.
*Name changed for confidentiality