If you have been diagnosed with Sydenham’s Chorea, you will usually be offered a treatment course of penicillin to get rid of any lingering Group A streptococcus infection in your body (the throat is one place it can hide without causing any obvious problems). Penicillin treatment does not help the symptoms, unfortunately.
After that, you may be offered long term Penicillin treatment. This is important if your Sydenham’s chorea is part of rheumatic fever.
If you don’t have rheumatic fever, then it’s not clear whether long term penicillin prevents relapses of chorea, but it makes sense that it might. There doesn’t appear to be a risk of heart damage if you have SC without other features of rheumatic fever.
The World Health Organisation (WHO) has guidelines about long term penicillin, America, Australia and New Zealand have their own guidelines, all slightly different. The WHO is currently (2021) reviewing their guidelines.
There are few issues around long term penicillin:
- Injected penicillin (given every 3 or 4 weeks) is probably more effective than tablets/liquid at preventing relapses but many doctors feel the pain and inconvenience of injections outweigh any possible advantage. You can get local anaesthetic for the injections (usually given in the buttock)
- The alternative to injected penicillin is tablets or liquid, taken twice a day. The liquid is pretty unpleasant tasting so most kids will learn to take tablets! It’s recommended that the liquid or tablet is taken on an empty stomach (so 2 hours after eating) and that you avoid eating for 30-60 minutes afterwards. This can be inconvenient.
- At the end of the day, not missing doses is probably more important than whether you choose injections or tablet/liquid, and whether you eat around the time of taking your medicine.
How long you stay on penicillin depends on the guidelines for the country where you live, and how badly your heart is affected. Some people will be on it for life. For others it will be until you are least 18yrs old, if not longer.
More about the issues of long term penicillin in SCA member Emanuela’s talk about what happens in Italy. Emanuela has also published an article about it.