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This information is to help you think about if your child with Duchenne would benefit from steroids or not. This is not intended to replace a discussion with a required muscle clinic team but more to give you further information.

Why do we use Steroids with Duchenne patients?

It has being known for a number of years that steroids have an effect on muscle strength in Duchenne. If used at an early stage, for example while the boys are still ambulant, then the steroids can help to improve stabilising or even improve muscle strength for a period of time. At present steroid use is the only form of treatment available for Duchenne patients.

What types of steroids are used?

There are 2 types of steroids that the boys can use, prednisolone and deflazacort. These steroids are not anabolic steroids as used by athletes illegally to help build up muscle. Each type of steroid has different side effects as explained under ?What are the possible risks?. with the prednisolone steroid usually being associated with weight gain, where deflazacort is usually associated with cataract problems. Both of these side effects can be managed with good medical care.

What possible beneficial effects?

Studies which are now being reported are showing that overall boys who are treated with steroids walk longer than those who are not on steroids. The effect does differ from child to child as the condition itself differs from child to child. Duchenne patients using steroids after losing the ability to walk also seem to develop other complications less frequently too, such as fewer problems with their spines and breathing.

What are the possible risks?

Use of steroids does unfortunately have some risk factor. These vary from person to person and also on the dosage and regime used. The prednisolone steroid is usually being associated with weight gain and mood changes. It is advisable to speak with a dietician prior to the use of prednisolone. Deflazacort is usually associated with cataract problems and so regular eye tests are a must to ensure the problem does not get out of hand.
Due to Duchenne patients already having thin bones, it is very important to look after the bone health. This can be achieved by promoting a healthy diet with a good intake of calcium and vitamin D. It is also advisable for a bone scan to be done so that there is a base line to work from when checking the status of the bones further down the line.

What age to start?

From experience it is suggested that Duchenne patients should consider the use of steroids from the age of 4 -5 years. Should this age already be passed it is still worthwhile to consider the use of steroids to help with the later stages of the condition.

What next?

Once the child has started to use steroids it is very important to keep an eye on the possible side effects that could potentially come into effect. It is very important that should the use of steroids be stopped that this is done gradually and simply not stopped as this can cause serious problems.

Where can I find more information?

You can ask for further information from your local clinic or phone:
Kate Bushby 0191 241 8757
Volker Straub 0191 241 8762
Michelle Eagle 0191 241 8756
Louise Hastings 0191 241 8736