Information for the public
Rozanolixizumab (Rystiggo) is available on the NHS. It is a possible add-on to standard treatment for generalised myasthenia gravis in adults who test positive for anti-acetylcholine receptor (AChR) or anti-muscle-specific tyrosine kinase (MuSK) antibodies, if all of the following apply:
- their condition is classified as Myasthenia Gravis Foundation of America class 2 to 4a
- their condition is uncontrolled after 2 or more treatments (other than acetylcholinesterase inhibitors), and
- intravenous immunoglobulin or plasma exchange would otherwise be offered, or has been tried and stopped because of side effects or because it did not work well enough.
If you are not eligible for rozanolixizumab but are already having it, you should be able to continue until you and your healthcare professional decide when best to stop.
Is this treatment right for me?
Your healthcare professionals should give you clear information, talk with you about your options and listen carefully to your views and concerns. Your family can be involved too, if you wish. See our webpage on shared decision making.
Questions to think about
- How well does it work compared with other treatments?
- What are the risks or side effects? How likely are they?
- How will the treatment affect my day-to-day life?
- What happens if the treatment does not work?
- What happens if I do not want to have treatment? Are there other treatments available?
Information and support
The NHS webpage on myasthenia gravis may be a good place to find out more.
These organisations can give you advice and support:
- Myaware, 01332 290 219
- Muscular Dystrophy UK, 0800 652 6352
- Genetic Alliance, 0300 124 0441, contactus@geneticalliance.org.uk
You can also get support from your local Healthwatch.
NICE is not responsible for the quality or accuracy of any information or advice provided by these organisations.
ISBN: 978-1-4731-9519-6
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