Ocrevus for primary progressive MS: What you need to know

In May 2019, NICE announced that it had approved Ocrevus (ocrelizumab) for NHS treatment of early, inflammatory primary progressive MS. Since then, it has been licenced across the UK. As the first ever treatment for progressive MS, this was a landmark decision, but one which also raised questions about who would be able to access the drug and how.

Ocrevus (also known as ocrelizumab) is a disease modifying drug (DMD) used in MS. It has been approved as an NHS treatment for relapsing remitting MS since 2018. 

Ocrevus slows the worsening of disability in early, inflammatory primary progressive MS (PPMS). In a large clinical trial, fewer people with PPMS taking Ocrevus had an increase in disability; people taking Ocrevus were 24% less likely to have an increase in their disability than those taking placebo. In more real-life terms, this is equivalent to potentially delaying the need for a wheelchair by seven years for people with early, inflammatory PPMS.

You can take Ocrevus as an intravenous infusion (drip) or an injection under the skin, given by a health professional. The first dose is broken into two given two weeks apart. After that, you have one infusion or injection every six months. The most common side effects include infusion-related reactions such as headache, rashes, fever and nausea. Other side effects include infections such as coughs, colds, chest infections and herpes virus infections (such as cold sores or shingles).

Ocrevus works by targeting and killing a type of white blood cell called a B cell. B cells are involved in the MS immune attack which damages the myelin coating around nerve cells in the brain and spinal cord. Reducing the number of B cells leads to less inflammation and less damage to myelin. 

The National Institute for Health and Care Excellence (NICE) and the Scottish Medicines Consortium (SMC) are responsible for evaluating the costs and benefits of new drugs and medical technologies. For each new product, they aim to get the best deal for people affected by that condition, while getting value for money for the NHS. This process can take several months, as a committee of experts reviews the data from clinical trials, patients, doctors and other stakeholders. 

At each stage, there are pauses for appeals and further consultations. Sometimes, drugs are rejected and later accepted for licencing after more evidence is presented. For drugs and other technologies that are relevant to people with MS, the MS Trust aims to follow this licencing process carefully, contributing evidence on behalf of people affected by MS. 

Initially, NICE completed a review of Ocrevus for PPMS in May 2018. Using the price already agreed for RRMS, they concluded that the benefits gained did not represent value for money to the NHS.  Drug manufacturer Roche proposed a reduced price for Ocrevus for PPMS but this was initially rejected. Following pressure from the whole MS community, NICE put the decision to reject Ocrevus on hold to allow time for more talks between NICE, NHS England and Roche. As a result, an agreement was reached in May 2019 to provide Ocrevus at a lower price for PPMS, bringing it within the range that NICE considers cost effective.

The MS Trust contributed throughout the consultation process. Before preparing our submission to NICE, we conducted a survey to gather the views of those affected by PPMS.  We received nearly 500 responses from people with PPMS, their families and specialist MS health professionals.  We are very grateful to everyone who contributed their experiences of living with PPMS.

As drug licencing is devolved to Scotland, the same process was carried out by the SMC, and the MS Trust contributed here too. In January 2020, SMC agreed to licence Ocrevus for early PPMS.

Ocrevus is the first drug which has been shown to reduce disability in clinical trials of progressive MS and is the first drug to be approved for NHS treatment of primary progressive MS. The introduction of a treatment for PPMS may also generate a greater focus on services for progressive MS and a more proactive approach to managing PPMS which could ultimately benefit a much wider group of people with PPMS than just those who are eligible for Ocrevus.

You may be eligible for Ocrevus if you have early, inflammatory PPMS. Early is defined by how long you have had PPMS and how it has affected you. You may be eligible if it is 15 years or less since your first symptoms of PPMS and if you are able to walk at least 20 metres, with or without walking aids (equivalent to EDSS 6.5). Inflammatory means that MRI scans show signs of MS activity which appears as new or enlarging lesions when two MRI scans are compared. 

You'll probably know if you meet the early criteria, but it's less likely that you'll know if your MS is inflammatory because, once diagnosed, MRI scans are not routinely carried out for people with PPMS. There are no age restrictions on starting Ocrevus.

We don't know exactly how many people will meet these criteria but at a rough estimate it is thought to be around a quarter (25%) of the 10,000 people with PPMS in the UK.

The first step is to contact your MS team and ask how they will be assessing people with PPMS for starting treatment with Ocrevus. If you have an annual appointment with your neurologist, this would be a good opportunity to ask for more information. 

If you are no longer in contact with a neurologist, you should ask your GP to refer you to the nearest MS team. You can find your nearest MS team using our map of MS services. Alternatively, call our MS helpline on 0800 032 3839 or email ask@mstrust.org.uk

At the moment, Ocrevus is the only treatment licensed and approved for NHS use which can modify the course of primary progressive MS. Since 2020, it has been available across the whole of the UK. for people with early primary progressive MS. 

For people who do not meet the criteria for Ocrevus, there is a wide range of drug treatments and other therapies can help to manage the symptoms of progressive MS. Following a balanced diet and staying as active as possible can also help you remain as healthy as possible. 

People with secondary progressive MS may be able to take other disease modifying drugs if their MS is active or inflammatory. If it is not, they may be encouraged to stop taking a DMD so as to reduce the risk of side effects where the drug may not be effective any more. Siponimod is a drug licenced for active secondary progressive MS since 2022.

Research into new disease modifying treatments for primary progressive MS is ongoing. You can read more about the progress of MS clinical trials in our page on drugs in development.

The development of new drugs is a long and difficult process. Fewer than one or two compounds in 10,000 tested actually make it through to being licensed treatments with many being rejected on safety, efficacy or quality grounds. On average it will take 10-15 years for a new compound to get from the test-tube into the medicine cabinet. It is important to remember that not all the treatments currently being developed or tested will receive a licence or be approved for use in the NHS.

• Primary progressive MS
• Drug development process
• Compare disease modifying drugs (DMDs)